thank you - hemophilia federation of america · 2018. 2. 16. · accent on children’s...

THANK YOU To Our 2015 Symposium Sponsors

Platinum Level | $95,000+Baxter Internationalwww.nava.baxter.com

Bayer Healthcarewww.bayer.com

Biogen Idecwww.biogenidechemophilia.com

Novo Nordiskwww.novonordisk-us.com

Gold Level | $50,000+CSL Behring

www.cslbehring.com

Kedrion Biopharmawww.kedrionusa.com

Pfizerwww.pfizer.com

Silver Level | $25,000+Octapharma

www.octapharmausa.com

Grifols USAwww.grifols.com

Bronze Level | $5,000+Alnylam Pharmaceuticals

www.alnylam.com

2 Symposium 2015 | Gateway to a Stronger Community | #HFA2015

15,000+

Symposium 2015 | Gateway to a Stronger Community | #HFA2015 3

TABLE OF CONTENTS

2015 Symposium Sponsors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Special Thanks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Welcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Exhibit Hall | 2015 Exhibitors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Hotel Map/Meeting Rooms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7,8

Registration/Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Children/Teen Programming . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Wellness Lounge Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Art Factor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Thursday, March 26th . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12-13

Friday, March 27th . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14-15

Saturday, March 28th . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16-19

HFA Programs: Breakout Sessions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

HFA Volunteers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20

HFA Board of Directors & Member Organizations . . . . . . . . . . . . . . . . . . . . . . . . . .20

HFA Staff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Our Sponsors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22-29

BE SOCIAL! Follow us on Facebook, Twitter, and Instagram

@hemophiliafed When you post pictures of Symposium be sure to use

#HFA2015


Symposium Planning Committee 2015

Kari Atkinson (Co-Chair)

Linda Wyman-Collins (Co-Chair)

Bridget Tyrey

Chad Stevens

Christopher Walsh

Danielle Flores

Darcy Zwier

Dave Robinson

Detrice Berry

Donnie Akers, Jr.

James Setliff

Jill Packard

Judy Igelman

Lesa Kaercher

Tabby Mayhan

Tracy Cleghorn

HFA AmbassadorsCarlos Ruiz

Chad Stevens

Josh Hemann

Kari Atkinson

Lesa Kaercher

Liliana Ruiz

Linda Wyman-Collins

Lori Long

Scott Boling

Sharon Ingram

Sonji Wilkes

Tracy Cleghorn

Wendy Chou

Our Symposium Partners & HostsGateway Hemophilia Association

Staff at the Hyatt Regency at the Arch

Teen VolunteersJohn Newman

Alex Ell

Shelly Mattson

Donald “Ziggy” Douglas

Ashley Hill

Sidney Watson

Children’s Program VolunteersAccent on Children’s Arrangements, Inc.

Judy Igelman

Mona Constantini

Special GuestJan Hamilton

Travel ArrangementsKR Events, Washington, DC

SPECIAL THANKSOur special thanks to those that helped

make this meeting possible!

HFA gratefully acknowledges a contribution of $25,000 from the Colburn Keenan Foundation, Inc. which sup-ported education travel grants specifically for return at-tendees to Symposium! HFA was able to provide grants to an additional 30 individuals and families through this generous donation. Thank you to all at Colburn – Keenan for enabling these attendees to experience yet another year at Symposium!

About Colburn – Keenan Foundation, Inc.A charitable organization dedicated to improving the health and wellbeing of individuals and families living with chronic illnesses, with priority placed on those living with bleeding disorders. Find out more at: www.colkeen.org

Dear Friends and Families,

WELCOMEand thank you for attending Symposium 2015! We are excited to be back in St Louis and that you are here to

share the weekend with us! It’s an exciting time for HFA as we continue to grow and change. We are your community-focused organization and your participation is vital to our success!

HFA welcomes and appreciates your calls, comments, and posts through the year. Those con-nections help to keep our programs, services, and advocacy work relevant and focused on our community. Please continue to bring suggestions and new ideas our way so we can continue to best serve you.

We are thrilled that our member organization in the St Louis area, Gateway Hemophilia As-sociation, is combining their annual meeting with Symposium. By working together, we know this will be the best meeting ever! We are pleased to offer you over 30 sessions of education and peer community support. We also invite you to say thanks as you visit with the 47 product and service providers in the exhibit hall. Their support helps make this meeting possible.

Our theme this year is Gateway to a Stronger Community. Each and every one of you has an opportunity to build a stronger community by:

• BEING INVOLVED. This weekend you will have the opportunity to network with hundreds of other individuals and families from around the country to gain valu-able knowledge, advocacy resources, and support from your national community organization. Use the time to your advantage!

• ASKING QUESTIONS. Be sure to actively participate in sessions. There is a full lineup of HFA programming, advocacy, and peer rap sessions. Tour the exhibit hall and learn what our sponsors and vendors have to share.

• TAKING ACTION. Attending this meeting is the first step. As you head home, we challenge you to take what you learn from our meeting to help your local commu-nity continue to grow.

Thank you for joining us and we look forward to an excellent Symposium. Enjoy the meeting!

Warm Regards,

Kimberly Haugstad, MBAExecutive Director

Tracy CleghornHFA Board President



1. Novo Nordisk3. Soleo Health4. Hemophilia Alliance5. The Alliance Pharmacy6. Emergent BioSolutions7. BioRx8. Comprehensive Bleeding

Disorders Center9. Brothers Healthcare10. American Homecare Federation11. Alnylam Pharmaceuticals12. Affinity Biotech13. Grifols14. Patient Services, Inc.15. Accurate Rx Pharmacy16. Baxter18. Kedrion Biopharma

19. HPC Specialty Pharmacy20. Walgreens Infusion Services21. ARJ Infusion Services22. World Federation of

Hemophilia USA23. Axiom Therapeutics, LLC24. Bioscrip25. Plasma Protein Therapeutics

Association (PPTA)26. CVS Caremark Specialty Pharmacy27. Pfizer28. Factor Support Network29. Matrix Health Group30. Biogen Idec32. Cottrill’s Pharmacy, Inc.33. Accredo34. CSL Behring35. Octapharma

36. American Thrombosis & Hemostasis Network

37. Homecare for the Cure38. Galen US, Inc.39. AxelaCare Health Solutions40. Specialty Therapeutic Care41. BioEthics Advantage42. Superior Biologics43. Ethical Factor Rx, LLC44. NCHS45. Bayer HealthCare52. Hemophilia Federation of America53. Gateway Hemophilia Association54. The Coalition For Hemophilia B55. National Hemophilia Foundation56. Reduce Inhibitor Development

(RID)

Exhibitor Booths


(ART FACTOR) Exhibit


REGISTRATION/INFORMATIONRegistration/Information Hours | Grand FoyerThursday, March 26th | 9:00 a.m.—5:00 p.m.

Friday, March 27th | 9:00 a.m.—5:00 p.m.

Saturday, March 28th | 9:00 a.m.—12:00 p.m.

Infusion Suite | Sterling Studio 8Note: Please call the number posted on the Infusion Suite door to schedule an infusion with a nurse.

Nurse Volunteer: Linda Wyman-Collins, BSN, RNC-NIC

Thursday, March 26th | As needed

Friday, March 27th | As needed

Saturday, March 28th | As needed

Scooters & Wheelchairs | RegistrationSPONSORED BY BAXTER

The hotel is wheelchair accessible. HFA has a small number of wheelchairs and scooters available during the meeting. Please stop by the registration desk for more information.


KIDS & TEENS

Children’s Program | Mills Studio 1-9

(Infants, 6 months—12 years)

Children will spend two days participating in fun activities using motor skills, games, stories, songs, and crafts. Professional caregivers have been trained in the care of children with bleeding disorders. Please be sure your child is checked in prior to departure times so they may enjoy these activities!

Note: For safety reasons, we do not release the children’s itinerary in advance. The full program will be provided on-site for parents and available at registration.

Reminder: Keep in mind childcare closing times. Please be respectful of caregivers and pick up your children at these times.

DAY REGISTRATION CHILDCARE

Thursday, March 26th 10:30 a.m.—11:00 a.m.* 11:00 a.m.—5:00 p.m.* 12:00 p.m.—5:00 p.m.

Friday, March 27th 8:00 a.m.—12:00 p.m. 9:00 a.m.—5:00 p.m.

Saturday, March 28th Registration closed 9:00 a.m.—5:00 p.m.

*Inhibitor attendees only

Teen Connection | Gateway East

SPONSORED BY OCTAPHARMA

The teens (ages 13-17) will participate in a program centered around being an advocate for themselves and for the bleed-ing disorders community. Throughout their sessions, teens will focus on self-assurance and team building activities to help them become better independent advocates. Teens will discuss the benefits and risks of disclosing a bleeding disor-der as well as how educating others can benefit the entire bleeding disorders community.

Please be sure your teen is checked in prior to departure times so they may enjoy these activities!

DAY REGISTRATION TEEN PROGRAM

Thursday, March 26th 10:30 a.m.—11:00 a.m.* 11:00 a.m.—5:00 p.m.*

Friday, March 27th 8:00 a.m.—12:00 p.m. 9:00 a.m.—5:00 p.m.

Saturday, March 28th Registration closed 9:00 a.m.—5:00 p.m.

*Inhibitor attendees only. There will be no teen program on Thursday, however teens are welcome to join the scheduled children’s program.


Be sure to stop by our FitFactor Wellness Lounge for a chance to learn about healthy activities from our guests who are experts in the fields of yoga, person-al training, and martial arts. Then treat yourself to a relaxing free massage. Our resident FitFactor guru, Janet Chupka, will also be on hand to greet you and answer questions about our popular FitFactor program.

The FitFactor Wellness Lounge is located in the Grand Ballroom Foyer, just outside of the Exhibitor Hall, on the 4th Floor.

Thursday, March 265:30 p.m.—7:30 p.m.

• 10-min Chair Massage – Massage Envy

• Yoga Instructor – Corey Pierce

• Personal Trainer – Michelle Morath

• FitFactor Program Info – Janet Chupka

Friday, March 279:30 a.m.—11:00 a.m.


• Personal Trainer – Michelle Morath


5:00 p.m. —7:00 p.m.


• Yoga Instructor – Corey Pierce

• Martial Arts Instructor – Michael Pezzillo


Saturday, March 2812:00 p.m.—1:30 p.m.


• Martial Arts Instructor – Michael Pezzillo


Wellness Lounge Schedule of Activities

About Our Sessions and InstructorsMartial Arts Instructor Michael Pezzillo is a Chief Instructor for Rhode Island’s Mastery Martial Arts. Having trained in the martial arts for nearly two decades, Michael is thrilled to bring the arts to the bleeding disorders community. Michael has seen firsthand how martial arts builds confidence in students of all ages, races, and physical ability. Michael’s two brothers, Rich and Anthony, are both affected by hemophilia.

Michael is available to answer your questions about martial arts and provide a brief demonstration.

Yoga InstructorCorey Pierce is a registered yoga instructor who has long been involved with the hemophilia community. He has worked in both in small group settings and at summer camp teaching yoga to parents as well as patients of all ages. Corey has seen the benefits of yoga for himself, having explored the sport to recover from an ankle fusion.

Not only is Corey available to answer your questions and offer instruction, but he will be leading a men-only chair yoga session on Friday at 9:00 a.m. and the Rise & Shine yoga session Saturday morning at 7:00 a.m., that you are encour-aged to attend!

Personal TrainerCertified Personal Trainer Michelle Morath is the owner of Albuquerque, New Mexico’s JourneyFit, LLC. Specializing in post-rehabilitation, older adults, and pain management, Mi-chelle designs individualized workouts tailored to meet each patient’s needs. Michelle strongly believes that, through proper exercise and nutrition, anyone can improve their quality of life.

Michelle is available to answer questions about fitness & exer-cise, helping to adapt it to your specific needs. Michelle will be leading Rise & Shine sessions on both Friday and Saturday mornings at 7:00 a.m., and would like you to join!

Chair MassageTake a break and stop by our FitFactor Wellness Lounge for a re-laxing massage from Massage Envy Webster Groves! Licensed massage therapists from one of the nation’s leading massage therapy clinics will be offering 10 minute chair massages on a first come, first served basis. These sessions are sure to be in high demand, so come early! (Adults 18 and over only, please)

FitFactor ProgramJanet Chupka, RN, BSN, HFA Programs Manager, has been leading HFA’s FitFactor Program since 2011. Janet knows that healthier bodies bleed less, and has been living this mantra for years. Janet is responsible for all of the great stories that you read, as well as all of the wonderful recipes and activity ideas that we share online and in Dateline Federation!

Stop by to talk with Janet about our FitFactor program and discover some of the great new projects and plans that we have to offer this year!

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Presented by FOLX in collaboration with HFAImages that represent the bleeding disorders community can currently be found in numerous strategic formats. From pharmaceutical exhibition dis-plays to direct mailings, these initia-tives attempt to interpret our everyday lives and then mirror those experienc-es back to us. While, admittedly, most campaigns are thoughtfully devel-oped, they still aim to serve tactical commercial goals aimed at our specif-ic target audience.

FOLX pays close attention to the dif-ferent messages these images send to the community and how, as a com-munity, we navigate these messages in both the public and private spaces of our bleeding disorders. FOLX won-ders how the current state of “Bleeder Image Culture” can more authentical-ly and effectively be portrayed.

(Art Factor) is an exhibition of art-works in response to this concern. Fea-turing bodies of work produced within the community, (Art Factor) provides an intimate look at how the artists use images to process and communicate the bleeding disorders experience. Ad-ditionally, for those enrolled in HFA’s Symposium Youth Program, the ex-hibition includes an interactive op-portunity to create their own artwork on-site and to formally display their creativity alongside the artists. Make sure to revisit (Art Factor) throughout Symposium to see the exhibition grow and witness the evolution of our image culture!

(ART FACTOR) Youth ProgramPresented by FOLX in collaboration with HFA

In this session, we’re going to make an awesome display of collaborative com-munity art for the (Art Factor) exhibition. The Youth Program will initially cover fundamental benefits to art-making that include creativity as a method for self- expression and as a tool for coping. A group exercise will brainstorm what kinds of images each might use to express their unique experiences within the community. Then, let’s make some art! All artworks will be on display in the exhibition!

(ART FACTOR) From The Source: Panel DiscussionPresented by FOLX in collaboration with HFA

Participating artists from the (Art Factor) exhibition will speak to the role bleeding disorders have played in their creative process. Panelists will correlate how this influence is specifically seen in their artworks on display in the exhibition and share other images from their art practice. Further, FOLX will lead a conversation on the importance of image representation and how our community can work to reclaim our image culture.

(Art Factor) Contributors: Billy Conde GoldmanBilly Conde Goldman (a bleeder) is an artist living and working in St. Paul, Minnesota. His most recent project, a collaboration with fellow artist Bob Lordan (not a bleeder), is entitled prayer for civilization, which consists of 64 paintings corresponding to the hexagrams of the i ching. He celebrates DIY approaches to living life and believes creativity is available to all, notwithstanding experience, skill, or talent.

Daniel McCully Daniel McCully is a photographer, husband, and father of two from Kingston, Ontario, Canada. His son Felix was born with severe hemophilia A and later developed an inhibitor. Over the last 4 years he has used his camera to document the journey through birth, ITI therapy, bleeds, and prophylaxis, capturing the everyday activities of an average family who just happens to be living with hemophilia.

Tim AndrewsTim Andrews creates paintings that explore issues of identity and self-representation as self-expres-sion. His work chronicles the personal and societal ramifications of having lived for 54 years as a person with hemophilia, and having lived thirty-plus-years with HIV and HCV. His self-portraits are a record of how he journeys through this reality and speaks to an unwavering will to survive. He lives in Tennessee.

Justin LevesqueJustin specializes in the critical analysis of images and their impact on social norms and community expectations. He lives in Portland, Maine where he runs his own design studio, Shop Geometry. He also serves as Creative Director for The Hemophilia Alliance of Maine and is Co-Director of the FOLX program, which celebrates and acknowledges creativity in the bleeding disorders community.


BOARD OF DIRECTORS/EDs

Board of Directors Breakfast | Gateway East7:30 a.m.—8:00 a.m.

Board Meeting | Gateway East8:00 a.m.—12:00 p.m.

Board & Executive Directors Lunch | Gateway West12:00 p.m.—1:30 p.m.

Board & Executive Directors: Truth and Transparency, Urban Myths | Gateway East1:30 p.m.—3:30 p.m.

INHIBITOR TRACK

Note: This is a closed session for families with inhibitors only. Pre-registration required.

Track sponsored by: Baxter, Grifols, Kedrion Biopharma

Inhibitor Attendees Breakfast | Park View9:30 a.m.—10:30 a.m.Attendees should register prior to breakfast

Childcare Drop-off (Inhibitor Attendees Only) | Mills 6Registration: 10:30a.m.—11:00 a.m.Drop Off: 11:00 a.m.—11:30 a.m.

Lunch Pick-Up | Park View11:30 a.m.—12:00 p.m.

Welcome & Sponsor Talks | Park View12:00 p.m.—12:20 p.m.

Promising Research & Products for Inhibitors | Park View12:30 p.m.—1:30 p.m.Shannon Meeks, MD

Break1:30 p.m.—1:45 p.m.

What? Me, Worry?! | Park View1:45 p.m.—2:45 p.m.Dave Robinson, PhD, LMFT

RID (Reduce Inhibitor Development) Update | Park View2:45 p.m.—3:15 p.m.Debbie Porter, Parent/Founder of RID

Past, Present, & Future of Inhibitor Prevention & Treatment | Park View3:15 p.m.—4:00 p.m.Chris Walsh, PhD, MD; Shannon Meeks, MD; Dave Robinson, PhD, LMFT; Mike Soucie, PhD; Sue Geraghty, RN; Debbie Porter, Parent/Founder of RID

Inhibitor Rap Session | Park View4:00 p.m.—5:00 p.m.Cazandra MacDonald

Childcare Pick-up (Inhibitor Attendees) | Mills 65:00 p.m.—5:30 p.m.

THURSDAY | MARCH 26TH


(Art Factor) Exhibit | Regency Ballroom FoyerOpen throughout Symposium

(Art Factor) is an exhibition featuring bodies of work produced within the community. (Art Factor) provides an intimate look at how the artists use images to process and communicate the bleeding disorders experience. Additionally, for those enrolled in HFA’s Symposium Youth Program, the exhibition includes an interactive opportunity to create their own artwork on-site and to formally display their creativity alongside the artists. Make sure to revisit (Art Factor) throughout Symposium to see the exhibition grow and witness the evolution of our image culture!

Industry Dinner: Biogen Idec | Regency Ballroom D-F7:30 p.m. – 9:30 p.m.Note: This session’s content is provided by industry.

Join Biogen for an exciting educational event called View-points. Hear from a peer speaker and learn more information about their products. Afterwards, enjoy the premier of “Outside In”, a fully immersive video experience about the science behind Fc Fusion technology!

THURSDAY | MARCH 26TH

GENERAL SESSIONS

Registration | Grand Foyer9:00 a.m.—5:00 p.m.

Childcare Registration | Mills 610:30 a.m.—11:00 a.m. for inhibitor families only12:00 p.m.—5:00 p.m. for all other attendees

Navigating the Conference | Grand Ballroom B & C3:00 p.m.—5:00 p.m.Janel Johnson-Momanyi, HFA Advocacy and Programs Manager; Lauren Neybert, HFA Associate Director of Programs

This session was created at the suggestion of HFA Sympo-sium attendees with the purpose of welcoming, engaging, encouraging, and supporting families who are attending the HFA Educational Symposium for the first (or second) time. HFA recognizes the need to provide networking opportuni-ties for individuals and families. We understand that, for many families, HFA’s Symposium is often the first opportunity to meet with other community members. Our hope is that this new session welcomes you into the community, connects you with individuals/parents who have faced the same challenges, helps you navigate the conference, and gives you an opportu-nity to have discussions with HFA Ambassadors throughout the conference.

Inhibitors: What You Need to Know | Grand Ballroom F & G4:00 p.m.—5:00 p.m.Sue Geraghty, RN

It’s the most feared complication currently in hemophilia – the development of an inhibitor. This session, open to all Sympo-sium attendees, will provide a basic overview of what it means to have an inhibitor, the risk factors for development, the challenges of inhibitor treatment and bleeding management, and general daily life.

Exhibit Hall + Wellness Lounge | Grand Ballroon D & E + Foyer5:30 p.m.—7:30 p.m.


EXECUTIVE DIRECTOR SESSIONS

Executive Directors: Best Practices & Great Results! | Grand Ballroom G8:00 a.m.—10:00 a.m.

Executive Directors: HFA Advocacy, Communications, & Programs—How It Works & Why! | Grand Ballroom G10:45 a.m.—11:45 a.m.

GENERAL

Rise & Shine Physical Activity | Grand Ballroom C7:00 a.m.—8:00 a.m.Michelle Morath

Join Certified Personal Trainer Michelle Morath as she leads the group through an invigorating yet gentle workout that can be replicated at home without the use of any special equip-ment. This workout is great for those who don’t have a lot of time or money for the gym, but still want to strengthen and tone their muscles. These exercises are adaptable and can be modified to meet all levels and abilities of attendees.

Breakfast | Regency Ballroom D-F7:30 a.m.—9:30 a.m.

Chair Yoga (Adult Men Only) | Grand Ballroom A9:00 a.m.—10:00 a.m.Corey Pierce

Tired of your same old fitness routine? Looking for something that will help get you re-energized and focused? Gentlemen, look no further! Join us for this guys-only invigorating, yet gentle yoga workout. If you’re intimidated by the idea of tak-ing a yoga class, worry no more. Chair yoga allows all individ-uals, even those with special considerations like chronic pain or fatigue, the opportunity to safely participate in and benefit from the art of yoga. You can try this gentle style of yoga using a chair for support. This series of movements and breath work will revitalize you and help strengthen muscles and joints and build flexibility. Back by popular demand!! Try it out! Please wear comfortable clothing.

Children's Programming | Mills Studio 1-99:00 a.m.—5:00 p.m.

Teen Programming | Gateway East9:00 a.m.—5:00 p.m.

Bleeding Tendency in Hemophilia Carriers (Adult Women Only) | Grand Ballroom B9:00 a.m.—10:00 a.m.Robert Sidonio, Jr., MD

Dr. Sidonio will discuss the diagnostic challenges in hemo-philia carriers and the current guidelines for the optimal man-agement of menstrual, obstetric, and other bleeding challeng-es throughout the lifespan of a hemophilia carrier. In addition, he will discuss recently published data demonstrating an increased bleeding tendency in hemophilia carriers and exciting new studies further investigating this new finding.

Exhibit Hall + Wellness Lounge | Grand Ballroom D & E + Foyer9:30 a.m.—11:00 a.m.

Be Involved…Ask Questions… Take Action! | Park View10:15 a.m.—10:45 a.m.Kimberly Haugstad, HFA Executive Director; HFA Staff

Join us for a glimpse of some of the many ways you can be involved and take action! Meet and greet HFA staff while learning how you can get involved and stay connected. This brief introductory session will be immediately followed by specific program area meet and greet sessions allowing you to connect with fellow Dads, Moms, Blood Brothers, and Blood Sisters. Please join us to learn how you can be involved as well as hear more about Symposium sessions you just won’t want to miss!

Blood Brothers and Spouses (Small Group Welcome Session) | Grand Ballroom A10:45 a.m.—11:45 a.m.

Blood Sisters (Small Group Welcome Session) | Grand Ballroom B10:45 a.m.—11:45 a.m.

FRIDAY | MARCH 27TH


Families (Small Group Welcome Session) | Grand Ballroom C10:45 a.m.—11:45 a.m.

Break11:45 a.m.—12:00 p.m.

Gateway to a Stronger Community (Welcome Luncheon) | Regency Ballroom A-C12:00 p.m.—2:00 p.m.

Be sure to join us for a message of hope, including a discus-sion of ways we can work together to build a stronger commu-nity through personal involvement as well as identifying ways to give back.

Break2:00 p.m.—2:15 p.m.

Advocacy: See It! Learn It! Do It! | Regency Ballroom A-C2:15 p.m.—3:45 p.m.Katie Verb, HFA Advocacy & Government Relations Manager; Wendy Owens, HFA CHOICE Project Manager; Stephen Fitzmaurice, HFA Communications & Policy Coordinator

This session will introduce advocates to new ways of participat-ing in advocacy at the local level. Advocates will learn the basics of working with their local organizations in advocacy efforts, basic tips and skills for participating in their local legislative days, and tips and tricks for speaking to legislators. Participants will also have an opportunity to write their own personal eleva-tor speech.

Hepatitis C: Advocacy and Choices for Therapy | Grand Ballroom A & B2:15 p.m.—3:45 p.m.Mark Antell; John Reed, DPH; Christopher Walsh, MD, PhD; Paul Brayshaw, MPH; Carl Weixler; Steven Walker, MS; Luisa Stamm, MD, Gilead Sciences; Jim Drew, Gilead Sciences

Join community advocates, the group People with Bleeding Disorders and HCV, and medical professionals in the bleeding disorders community for an update on Hepatitis C treatment options, clinical trial information, and advocacy efforts for better access to therapies. Gilead Sciences will also present on their patient support programs as well as plans for improved therapies.

Refreshment Break | Regency FoyerSponsored by Alnylam Pharmaceuticals3:45 p.m.—4:00 p.m.

Remembrance Service | Park View4:00 p.m.—5:00 p.m.Greg McClure, MS, MA, LSW

Join us as we celebrate and remember friends and loved ones, both living and departed.

Exhibit Hall + Wellness Lounge | Grand Ballroon D & E + Foyer5:00 p.m.—7:00 p.m.

Industry Dinner: Baxter | Regency Ballroom D-F7:00 p.m.—9:00 p.m.Note: This session’s content is provided by industry.

Join us as we light the night with activities the whole family can enjoy.

Family Game Night | Regency Ballroom CSponsored by Baxter9:00 p.m.—11:00 p.m.

Come join the fun! Play a few hands of Texas Hold ‘Em, and make new friends (no actual money will be used). Puzzles, board games, and much more will be available for the entire family to enjoy!

Stop the Bleeding! Season 5 Premiere | Regency Ballroom B9:00 p.m.—10:30 p.m.Patrick James Lynch; Ryan GielenNote: This session’s content is provided by Stop the Bleeding! Stop The Bleeding! is made possible by Baxter.

Join creator/producer/star Patrick James Lynch, director/producer Ryan Gielen, and other STB! cast members for a memorable evening of entertainment, featuring a screening of a BRAND NEW EPISODE from the upcoming season. A live performance, special guest, and Q & A will round out this must-attend Friday night event. Open to all community members.

COTT Meeting | Grand Ballroom C9:30 p.m.—10:30 p.m.Note: This session is hosted by the The Committee of Ten Thousand (COTT).

FRIDAY | MARCH 27TH


Rise & Shine Physical Activity | Grand Ballroom B & C7:00 a.m.—8:00 a.m.Michelle Morath, Corey Pierce Note: You can choose either Yoga or Group Workout

Start your day the healthy way by participating in one of our physical activity sessions. Your choice of an energizing exer-cise class led by a Certified Personal Trainer, who will lead you through a workout that can be duplicated at home. Or choose a more peaceful approach to your morning with the gentle stretching and deep breathing of Yoga. Both sessions are adaptable and can be modified to accommodate all levels and abilities of the attendees.

Industry Breakfast: Bayer HealthCare Your Journey to Joint Health Through Exercise | Regency Ballroom D-F 7:30 a.m.—9:30 a.m.Note: This session’s content is provided by industry.

Join Bayer HealthCare on Saturday morning as Jeff Kallberg, PT, a licensed physical therapist who has hemophilia A, takes us on a journey toward building stronger, healthier joints through exercise. Jeff will talk about how your joints work, how your body moves, and will discuss simple exercises to help strengthen your joints. You don’t need to travel far to take part. Breakfast is on us!

Children's Programming | Mills Studio 1-9 9:00 a.m.—5:00 p.m.

Teen Programming | Gateway East9:00 a.m.—5:00 p.m.

Breakout #1: Insurance Trends | Grand Ballroom A9:30 a.m.—10:30 a.m.Sydney Watson, St. Louis University School of Law Professor; Katie Verb, HFA Advocacy & Government Relations Manager

What’s the landscape for insurance in the next few years? How will this impact Medicaid/Medicare? And what are the trends regarding Exchange plans? Join us as we discuss these issues and how they impact the community, while identifying possi-ble advocacy opportunities.

Breakout #2: (Art Factor) From the Source | Grand Ballroom B9:30 a.m.—10:30 a.m.Tim Andrews; Bill Conde Goldman; Justin Levesque

Participating artists from the (Art Factor) exhibition will speak to the role bleeding disorders have played in their creative process. Panelists will correlate how this influence is specif-ically seen in their artwork on display in the exhibition and share other images from their art practice.

Breakout #3: Taking Care of You, A Caregiver’s Perspective | Grand Ballroom C9:30 a.m.—10:30 a.m.Sharon Ingram, MS, HS-BCP, CWHC; Cazandra Campos-McDonald; John Bruno; Carol Reed; Bill Berger, MS, MSW

The bleeding disorders community is made up of dedicated caregivers. Moms, dads, partners, spouses, and friends play a crucial supportive role in their loved one’s well-being. Howev-er, caregivers can often feel stressed, overwhelmed, and burnt out. Join us to hear the perspectives of a mom, dad, spouse, and social worker in the community to learn how to prioritize taking care of you while pushing those feelings of guilt aside.

Breakout #4: Connecting the Social Media Dots 2.0 | Grand Ballroom F9:30 a.m.—10:30 a.m.Rich Pezzillo, HFA Communications Director; Stephen Fitzmaurice, HFA Communications & Advocacy Coordinator

It’s easy to doubt the power of social media and to write it off as a waste of time. Building off of last year’s Symposium session, this interactive presentation will provide attendees with a more detailed way to safely engage, network, and raise awareness as members of the bleeding disorders community.

Break | Regency Foyer 10:30 a.m.—10:45 a.m.

SATURDAY | MARCH 28TH


On the Horizon | Regency Ballroom A & B 10:45 a.m.—12:00 p.m.Meg Bradbury, MS, CGC, MSHS; Annette von Drygalski, MD, PharmD; Dave Robinson, PhD LMFT; Mike Soucie, PhD; Chris Walsh, PhD, MD

What’s coming down the pike? What can we expect? Why should we be hopeful? In this session, leading physicians and researchers will provide an overview and perspective of what is on the horizon in areas of clinical trials, treatments, and an eventual cure for bleeding disorders. The session will include ample time for audience questions and interaction.

Lunch (Exhibit + Wellness Lounge) | Grand Ballroom D & E + FoyerBox Lunch Sponsored by CSL Behring, Pfizer, Kedrion BioPharma12:00 p.m.—1:30 p.m.

Dear Addy Live! – Making Advocacy Personal | Regency Ballroom A & B 1:30 p.m.—2:30 p.m.Katie Verb, HFA Advocacy & Government Relations Manager; Wendy Owens, HFA Principle Investigator; Jim Romano, Patient Services, Inc. (PSI); Michele Guadalupe, Arthritis Foundation

Back by popular demand, this interactive session will address those personal questions families are having. Panelists will field questions submitted to “Dear Addy” as well as from those in the audience about advocacy, policy, and insurance issues.

BLOOD BROTHERHOOD TRACK

Managing Arthritis with Hemophilia: Prevention and Treatment | Grand Ballroom A1:30 p.m.—2:30 p.m.Annette von Drygalski, MD, PharmD

This session is geared exclusively for adult men with hemophil-ia and other bleeding disorders, specifically those living with joint damage and arthritis. Attendees will have the opportunity to learn about preventative techniques and treatment interven-tions in the management of arthritis. Questions and interaction with the presenter is highly encouraged in this session.

Orthopedics: A Hemophilia Case Study Perspective | Grand Ballroom A2:30 p.m.—3:30 p.m. James Luck, Jr., MD

Join this informative session on joint health and repair in adult males living with hemophilia and other bleeding disorders. An orthopedic surgeon will inform attendees of treatment options and therapies through actual case studies from patients with hemophilia. Attendees are highly encour-aged to ask questions and interact with the presenter.

Rap Session | Grand Ballroom A3:30 p.m.—5:00 p.m.John Reed and Paul Brayshaw, Blood Brotherhood Committee Co-Chairs

Back by popular demand! Join other Blood Brothers in this roundtable discussion. Men from across the country will meet to network and learn from each other.

*Only open to adult men with a bleeding disorder. No industry employees allowed, unless you also are an adult man with a bleeding disorder.

YOUNG ADULTS TRACK

Track Sponsored by Kedrion Biopharma

A Boy, A Girl, Hemophilia, & the Relationship that Happened Anyway | Gateway West1:30 p.m.—2:30 p.m.Shawn Decker; Gwenn Barringer

Since 2000, Shawn Decker and Gwenn Barringer have been educating together and using their relationship as a way to show that laughter and honesty are what makes a relation-ship healthy, regardless of the presence of medical conditions. They’ve successfully engaged tens of thousands of people, and have shared their story with millions through Cosmo-politan magazine, MTV, BBC, and HBO films. Join them in a special presentation exclusively for young adults in the bleeding disorders community.

Know Your Rights | Gateway West2:45 p.m.—3:30 p.m.Donnie Akers, Jr., General Counsel, HFA

Come join this important session to learn about your rights as an employee with a bleeding disorder and how to advocate for yourself. Attendees will have the opportunity to learn about the rights protected by the Americans with Disabilities Act, Rea-sonable Accommodations, and the Family Medical Leave Act.



Powering Through | Gateway WestSponsored by NCHS3:45 p.m.—5:00 p.m.Patrick James Lynch

“Stop The Bleeding!’s” Patrick James Lynch hosts a lively panel conversation with inspiring individuals—from both within the disorders community and from outside of it—about the obstacles they’ve had to overcome in their ongoing path to becoming their best selves. This panel will include the incredible Lacey Henderson, who lost her leg when she was a child to a rare soft-tissue cancer but didn’t let that stop her from pursuing her athletic goals and dreams of becoming a Division I scholar athlete and American & World Paralympic record holder. Part of the Young Adult track, but open to all community members.

BLOOD SISTERHOOD TRACK

Joint Health for Women | Grand Ballroom B2:30 p.m.—3:30 p.m.Presentation prepared by Sue Geraghty, RN

In this educational session, women will have the opportunity to learn about the four basic components of joint health, risk factors, prevention, and treatment. Developed to address the particular issues and needs associated with joint health that women with a bleeding disorder may encounter. A question and answer portion will be included. A special thanks to Sue Geraghty, RN, for the development of this presentation.

Communication & Advocacy Strategies for Women with Bleeding Disorders | Grand Ballroom B3:30 p.m.—4:30 p.m.Katie Verb, HFA Advocacy & Government Relations Manager; Meg Bradbury, MS, CGC, MSHS

In life, we know that communication is key. For women with a bleeding disorder, it is even more important. How do we talk to our physicians, family, friends, bosses, or even co-workers about what we are feeling and experiencing, and when is the right time? Katie and Meg will guide women through the pro-cess and provide strategies to help women become better com-municators. They will follow it up with ways to become a better advocate for yourself using these communication strategies. Communication & Advocacy—you can do it, we can help!

Rap Sessions: Women with Hemophilia/vWD or other Rare Bleeding Disorders | Grand Ballroom B/Park View4:30 p.m.—5:30 p.m.Linda Wyman-Collins, BSN, RNC-NIC; Vicki Jacobs-Pratt, MSNPMG

This session will break out into two groups: (1) Women with hemophilia and carriers and (2) Women with vWD or other rare bleeding disorders. You will connect and talk to other women who share similar experiences in this open format, peer-led session. We will learn about and from one another as we continue on our journey as Blood Sisters.

*Only open to adult women with a bleeding disorder. No industry employees allowed, unless you also are an adult woman with a bleeding disorder.

FAMILIES TRACK

Unique & Normal: Parenting in Bleeding Disorders | Grand Ballroom F & G2:30 p.m.—4:00 p.m.Sonji Wilkes, HFA Programs Manager; Laura Gray, LICSW;Ziva Mann; John Bruno; Darcy Zwier;Josh Hemann; Vanessa Flora

Settling into raising a child with a bleeding disorder and learn-ing how to master the skills needed while accepting your fam-ily’s new normal can seem like an insurmountable hurdle. This interactive session includes sharing from families who are sometimes soaring and sometimes tripping over the hurdles of acceptance, infusions, and pain. The session will begin with findings from Laura Gray & Ziva Mann, two of the co-authors of The Gift of Experience II: Conversations with Parents about Hemophilia, a collection of stories from parents of children ages birth-6 years old. A panel of parents (a parent raising a girl with a bleeding disorder, a parent raising a child with mild or moderate hemophilia, a parent who’s child has an inhibitor, and a parent of a child with severe hemophilia) will share where their experiences have led. While everyone’s journey is differ-ent, most families find understanding and guidance from with-in the bleeding community that can help you and your family.




Rap Session: Moms in Action | Grand Ballroom F & G4:00 p.m.—5:00 p.m.Dawn Evans; Bridget Tyrey; Diane Lima

Join other moms and mother figures in this open format, peer-led session that’s a safe spot to talk about what it’s like to raise a child with a bleeding disorder. Moms of all ages welcome – whether you have a 3 year old or 39 year old – once you are in the motherhood, you are a Mom in Action! HFA’s Moms in Action program provides resources and seeks to increase connections among mothers – this is a session to learn more, take action, and get involved. Please join us – you’ll meet friends for life here.

*Only open to mothers of a person with a bleeding disorder. No industry employees allowed, unless you also are a mom of someone with a bleeding disorder.

Rap Session: Dads in Action | Grand Ballroom H4:00 p.m.—5:00 p.m.Stanford Murray; Douglas Hartsough

For dads raising a child with a bleeding disorder, this session will be an open format that will be led by fathers from within the community. Participants will learn about HFA’s Dads in Action program and all the resources we have to offer. This is your time to connect and network with others and is a safe place to ask questions and talk about what it’s like for you – the dad, daddy, father, and papa.

*Only open to fathers of a person with a bleeding disorder. No industry employees unless you are a dad of someone with a bleeding disorder.

SPOUSES/PARTNERS

Rap Session: Partners & Spouses | Grand Ballroom C3:30 p.m.—5:00 p.m.Sharon Ingram, MA, HS-BCP, CWHC; Elaine Chan, MSW/MPH

Are you the partner or spouse of a loved one with a bleeding disorder? This session is for you! Join a round-table discus-sion group with other partners and spouses to connect and share experiences.

*Only open to partners/spouses of a person with a bleeding disorder. No industry employees allowed, unless you also are a partner/spouse of someone with a bleeding disorder.

GENERAL

Break5:00 p.m.—6:30 p.m.

Final Night Event | Regency Ballroom C-FSponsored by Novo Nordisk6:30 p.m.—11:00 p.m.

Come on out and enjoy the fun! Get ready to Rock Around the Clock at the Final Night Event! Enjoy 50’s food, music, games, and entertainment for the whole family! Be sure to dress to impress in your 50’s best!


VOLUNTEERS | BOARD | STAFF

HFA VolunteersTo the many volunteers, activists, and advocates that work with us through the year, we honor and appreciate you.

HFA Board of Directors & Member Organizations*Does not reflect changes in board after March 1, 2015

EXECUTIVE BOARD

Tracy Cleghorn | Board President

Scott Boling | 1st Vice President

Mark Antell | 2nd Vice President

Douglas Hartsough | Treasurer, Hemophilia Foundation of Northern California

Rea Watson | Secretary, Sangre de Oro Hemophilia Foundation of New Mexico

Diane Lima | New England Hemophilia Association

Mandy McCullough | Connecticut Hemophilia Society

Matthew Compton | Past President

BOARD MEMBERS

John Palmatier . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Alaska Hemophilia Association

Robin Parker . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Foundation of Arkansas

Open Seat . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Arizona Hemophilia Association

Sean Hubbert . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Central California Hemophilia Foundation

Mickey Price . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Foundation of Southern California

Maria Rubin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Florida Hemophilia Association

Josh Hemann . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia of Iowa

Open Seat . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Snake River Hemophilia and Bleeding Disorders Association

Bob Robinson . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Bleeding Disorders Alliance Illinois

Scott Ehnes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia of Indiana

John Redington . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Comprehensive Bleeding Disorders Center

Edgar Guedry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Louisiana Hemophilia Foundation

Carletha Gates . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Foundation of Maryland

Vicki Jacobs-Pratt . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Alliance of Maine

Dawn Evans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Foundation of Michigan

Aaron Reeves . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Foundation of Minnesota and the Dakotas

Suzanne Sirko-Carney . . . . . . . . . . . . . . . . . . . . . . . .Gateway Hemophilia Association

Sean Jeffrey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Rocky Mountain Hemophilia and Bleeding Disorders Association

Zack Strange . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia of North Carolina

Peter Marcano . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Association of New Jersey

Tom Russomano . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Independent

Wendy Chou . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .New York City Hemophilia Chapter

Stephen Graziano . . . . . . . . . . . . . . . . . . . . . . . . . . . .Mary M. Gooley Hemophilia Center

David Huskie . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Bleeding Disorder Association of Northeastern New York


Linda Mugford . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Association of New York, Inc.

Lesa Kaercher . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Bleeding Disorders Association of the Southern Tier

Ray Volney . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Northern Ohio Hemophilia Foundation

John Reed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Oklahoma Hemophilia Foundation

Stewart Worthington . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Foundation of Oregon

Open Seat . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Eastern Pennsylvania Chapter

Derek Flake . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Mid-South Bleeding Disorders Foundation

Suzie Harlan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Tennessee Hemophilia and Bleeding Disorders Foundation

Chad Fredericksen . . . . . . . . . . . . . . . . . . . . . . . . . . .Texas Central Hemophilia Association

James Setliff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Lone Star Hemophilia Chapter

Linda Wyman-Collins . . . . . . . . . . . . . . . . . . . . . . . .Independent

Hector Ortiz . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Outreach of El Paso

Stephen Long . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Hemophilia Association of the Capital Area

Zack Bordone . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Virginia Hemophilia Foundation

Michael Birmingham . . . . . . . . . . . . . . . . . . . . . . . . .Bleeding Disorders Foundation of Washington

Darcy Zwier . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Wisconsin Bleeding Disorders Network

HFA Staff & Consultants*Kimberly Haugstad | Executive Director

Susan Swindle | Development Director

Michelle Burg | Programs Director

Pat Brown | Director of Meetings/Office Manager

Rich Pezzillo | Communications Director

Matt Landseadel | Director of Technology Services

Lauren Neybert | Associate Director, Programs

Janet Chupka | Programs Manager

Sonji Wilkes | Programs Manager

Katie Verb | Advocacy & Government Relations Manager

Janel Johnson-Momanyi | Advocacy & Programs Manager

Wendy Owens | CHOICE Project Manager

Elaine Chan | Programs Coordinator

Athenna Harrison | Project Coordinator

Stephen Fitzmaurice | Communications & Advocacy Coordinator

Samantha Costa | Development Coordinator

Deema Tarazi | Advocacy Intern

Meredith Clark | Project Coordinator

Michael DeGrandpre | Graphic Designer*

Kristin Mitchell | Graphic Designer*

Christie VanHorne | Program Consultant*

Chuck Zellermayer | Accountant**Independent consultants


Annette von Drygalski, MD, PharmDAnnette von Drygalski, MD, PharmD, is is the Assistant Clin-ical Professor of Medicine in the Division of Hematology/Oncology, and Director of the Hemophilia and Thrombosis Treatment Center, Department of Medicine, at the University of California, San Diego. She is also a Adjunct Assistant Pro-fessor, Department of Molecular and Experimental Medicine at The Scripps Research Institute, La Jolla, California. Dr. von Drygalski earned her PharmD from Ludwig Maximilians Uni-versity, and her medical degree from Friedrich Alexander Uni-versity Erlangen/Nürnberg and Ludwig Maximilians Univer-sity in Munich, Germany. She completed residency in Internal Medicine at the Medical College of Wisconsin, Milwaukee, and fellowship in Hematology and Oncology at the University of California, San Diego and The Scripps Research Institute. Dr. von Drygalski is board certified in hematology, oncology, and internal medicine. She is a member of the American Society of Hematology and the World Federation of Hemophilia. Dr. von Drygalski is dedicated to the care of patients with hemophilia and other bleeding disorders. In this role, Dr. von Drygalski de-veloped basic, translational and clinical research interests ad-dressing the evolving needs of aging patients with hemophilia, such as cardiovascular and joint disease. Dr. von Drygalski is the institutional principal investigator of several internation-al clinical trials exploring long-acting or novel clotting factor products, as well as studying hypertension, and joint disease in patients with hemophilia at the bench and in clinic.

Bill Berger, MS, MSWBill Berger, MS, MSW is a social worker/program coordinator at the Washington University Center for Treatment of Bleeding and Blood Clotting Disorder in St. Louis, MO. He is a former Gateway Hemophilia Association (St. Louis) Board member and has been actively involved in education, research, and advocacy with the bleeding disorders community for over 20 years.

Bill Conde GoldmanBilly Conde Goldman (a bleeder) is an artist living and work-ing in Minnesota. His most recent project, a collaboration with fellow artist Bob Lordan (not a bleeder), is entitled prayer for civilization which consists of 64 paintings corresponding to the hexagrams of the i ching. He celebrates DIY approaches to living life and believes creativity is available to all notwith-standing experience, skill, or talent.

Bridget Tyrey Bridget Tyrey has a son, Austin, with severe hemophilia A. Brid-get was first connected to the hemophilia community when she lost her father in 1986. After the birth of her son, she served on the Gateway Hemophilia Association board for over 16 years. She taught her son the power of self-advocacy when he was only 2. Bridget and her sister started Camp Notaclotamongus in 2008 for children with a bleeding disorder. She now serves as the Executive Director of Gateway Hemophilia Association.

Carl WeixlerCarl Weixler started his involvement with the bleeding disor-der community at the age of 4 when he met with the Governor of Kentucky to discuss a “hemophilia program” for the state. He is a Past President of HFA and the Kentucky Hemophilia Foundation. He served as Chair of the KY Hemophilia Advi-sory Committee and on numerous advisory boards for gov-ernmental agencies and manufacturers. He has been a public speaking advocate here and abroad. He is currently a member of the board of directors for the Committee Of Ten Thousand. Carl is very passionate about his: community, family, and God. If you’ve ever met him, you know he says…“I woke up this morn-ing and was NOT in hell or the hospital, it’s a good day!”

Carol ReedCarol Reed was raised in Texas and now enjoys the relaxed country life living outside Oklahoma. She was the Executive Assistant for Southwestern Medical Center in Lawton for 22 years, but left to help her husband, John, in their efforts to provide care to those with hemophilia. Carol and John, who has severe hemophilia (factor VIII), have been married for six years. Together, they currently have six children and sixteen grandchildren. When not working or spending time with fami-ly, Carol is very involved with her church and enjoys spending time with John bowling, fishing, and traveling.

Cazandra Campos-MacDonaldCazandra received a Bachelor of Music Education Degree from Houston Baptist University and taught band in the Texas Pub-lic School System for 13 years. In 1996, she gave birth to her first son, who was diagnosed with severe hemophilia A. Cazan-dra continued to teach and devoted her extra time to educating herself and others with bleeding disorders. In 2001 she was ap-proached by her home care company to develop a newsletter

SPEAKERS


to educate patients about bleeding disorders. In 2003 she was hired full time as Marketing Manager for the company, which eventually became part of the Walgreens family. In 2006 she gave birth to a second son, also diagnosed with severe hemo-philia A with an inhibitor. After the birth of her second son, Cazandra learned the truth about the brother she never knew: Ronaldo Julian Campos was born and lived for only five days. He died from complications from a head bleed. Cazandra has worked as an advocate in the bleeding disorder community for 18 years. She is an avid blogger and writes two blogs; one is “2BrothersWithHemophilia”. You can find Cazandra and her blogs at www.cazandramacdonald.com, on Twitter @2bros-withhemo, and on Facebook. She is also one of HFA’s bloggers for “Infusing Love: A Mom’s View.”

Chris Walsh, MDDr. Chris Walsh is Associate Professor, Medicine/Hematology and Medical Oncology and Associate Professor, Gene and Cell Medicine at St. Sinai University in New York City. He is Director of the Mt. Sinai Hemophilia Center. Dr. Walsh received a Bach-elor’s degree in biochemistry from Rutgers College in 1975. He was awarded a Ph.D. degree in Biochemistry from Bowman Gray School of Medicine in 1981 and an M.D. from Tulane University in 1986. His laboratory research revolves around the develop-ment and application of cellular and genetic therapies for he-matological-based disorders, both inherited and acquired. The adeno-associated virus (AAV), a principal vector system he de-veloped and continues to improve for bleeding disorders such as hemophilia A, B and Von Willebrand disease (vWD), is a ma-jor research interest. As Director of the Mount Sinai Hemophilia Treatment Center, he is actively involved in studies addressing hemophilia patients with inhibitors, long-acting factors, and new drugs. In tandem with research interests, he has published on the use and adherence of factor prophylaxis in hemophilia patients. The goal of his gene transfer work is to produce sus-tained and therapeutic factor levels in hemophilia patients.

Corey PierceCorey Pierce has long been involved with the hemophilia com-munity. He has been a counselor at the Hemophilia Foundation of Oregon (HFO) camp since 2002 and served as an administra-tive assistant in 2010. He is a severe hemophiliac and recently completed a master’s degree in epidemiology in the Nether-lands. While interning with Bayer Health Care/Pharmaceuticals, he proposed the “Living Fit: A Joint Effort Program.” to advocate for greater physical fitness for children with bleeding disorders. Corey is also a registered yoga instructor. He has taught yoga classes both at camp and to parents of children with bleeding disorders. Corey shares, “I came to yoga in an attempt to build

back muscle that had atrophied following an ankle fusion/sur-gery. I became dedicated to the practice as all of the subtle bene-fits, both psychologically and physically, became apparent.”

Dave Robinson, PhDDave Robinson is a licensed and practicing marriage and fam-ily therapist and director of the marriage and family therapy program at Utah State University. He and his wife, Jamie, have 5 children (three sons and two daughters). The oldest and youngest sons both have moderate Factor IX hemophilia. Dave travels the country sharing his experience and expertise with families on behalf of HFA’s Families program.

Dawn EvansDawn Evans is the mother of 22-year-old Dylan, a senior at the University of Toledo, who is affected with severe factor VIII hemophilia. Dawn’s father was also affected with severe factor VIII hemophilia with an inhibitor and she is a symptomatic car-rier. Dawn works for the Hemophilia Foundation of Michigan.

Debbie PorterDebbie Porter has been involved in the bleeding disorder com-munity for most of her life. Her father was born with severe hemophilia A in 1934 and passed away from complication of HIV/AIDS in 1986. Her son has severe hemophilia A with a high titer inhibitor and her two daughters also have bleeding disorders. After many years of dealing with an inhibitor, Debbie and her son recognized a need for greater awareness and edu-cation about inhibitors to hemophilia treatments. She founded RID (Reduce Inhibitor Development) in 2013 as a grass-roots patient advocacy group. RID provides educational materials, monitors product safety and licensing developments, and col-laborates with others to promote awareness. RID aims to en-courage the research and development of methods to prevent and eradicate inhibitors so that all people with bleeding disor-ders can experience safe and effective treatment. Debbie has a degree in Business Administration and has completed several years of clinical training towards a registered nursing degree. She ran her own company as a Certified Public Accountant providing accounting and management services to non-profit organizations; she currently works as a consultant in rare dis-ease management.

Diane LimaDiane Lima is a member of the HFA board and is also serves on the board of the New England Hemophilia Association , where she is on both the Governance and Advocacy Committees. She has three sons, one of whom has severe hemophilia A and von Willebrands type 2n. Diane and her family reside in Massachu-setts.


Donald Akers, Jr. HFA CounselDonald (Donnie) Akers, Jr. is an attorney from Louisiana whose relationship with HFA began as a volunteer legal advisor when HFA was headquartered in Lafayette, Louisiana. From 2000 to 2008, Donnie served as a member of the HFA Board of Direc-tors, Executive Committee, and 2nd Vice President. Donnie is a former HFA board member, and Symposium Co-Chair, he con-tinues to serve as HFA’s General Counsel today. He has rep-resented HFA on Capitol Hill and also at NIH, CDC, DHHS, PPTA, BPAC and at other meetings relevant to the hemophilia community. He holds a Bachelor’s Degree in Political Science from the University of Louisiana-Lafayette, a Juris Doctorate from the LSU Law School, and he studied Rehabilitation Coun-seling at the Graduate School of University of Louisiana-Lafay-ette. Donnie has taught “Law and Banking” for the American Bankers Institute and at South Louisiana Community Col-lege. He practices business and estate law with the Gibbens & Stevens law firm in New Iberia, Louisiana and he serves as an Assistant District Attorney for the 16th Judicial District of Louisiana where he works with the Elderly Protective Services Division and the Family Services Division of the DA’s office.

Douglas HartsoughDoug Hartsough was born and raised in Pittsburgh, PA. He was introduced to the hemophilia community when the 4-year-old son of his adopted daughter fell and experienced a cranial bleed. After more than a week of doctor visits, they discovered his hemophilia and Doug rushed him to Children’s Hospital Oakland, CA. In the 16 years since that discovery, Doug has served a 2 year term as President of the Hemophilia Founda-tion of Northern California and 6 years on the HFA Board of Directors.

Elaine Chan, MSW, MPH, HFA Programs CoordinatorElaine Chan is a Program Coordinator at HFA for the Helping Hands and Dads In Action programs. Prior to joining HFA in Spring 2014, Elaine worked extensively in the mental and be-havioral health field, providing therapeutic services to under-served children and families, coordinating social services and programming to cancer patients, and program development and evaluation for women experiencing homelessness. Elaine received her MPH at Boston University in Boston, MA, MSW at Temple University in Philadelphia, PA, and BS in Psychology at University of Pittsburgh. Elaine currently resides and works in Washington, DC.

Greg McClure, MA, MS, LSWGreg, an ordained minister, has been a member of the hemo-philia community for over 35 years. He and his wife Diane (D. 2011) have two adult sons—Marcus (D. 2007) and Gregg with severe hemophilia A. For the past twenty years, he has worked as a railroad conductor and a HTC social worker. Although re-tired, he still serves as a volunteer for the HFA Medical Ad-visory Board, the NHF Cultural Diversity Working Group, the Sharing Is Caring Outreach Ministry, and the Marcus McClure Big Dreams Foundation.

Gwenn Barringer and Shawn DeckerAs an undergraduate at Wittenberg University, a young wom-an with HIV spoke at Gwenn’s sorority house. Inspired, Gwenn took a class on HIV/AIDS. While attending James Madison University’s graduate program, she volunteered for an AIDS Service Organization and that’s how she met Shawn, who had recently opened up about his experiences living with HIV. In-fected as a child through contaminated blood products used to treat his hemophilia, Shawn Decker faced discrimination early in life. In the 6th grade, he was expelled from school after test-ing positive. He navigated the dating world in high school with a secret he guarded tightly. At age 20, he had a change of heart and went public by creating one of the first HIV-specific blogs .

Since 2000, Shawn and Gwenn have been educating togeth-er, using their relationship as a way to show that laughter and honesty are what makes a relationship healthy, regardless of the presence of medical conditions. They’ve successfully en-gaged tens-of-thousands of people, and have shared their sto-ry with millions through Cosmopolitan Magazine, MTV, BBC and HBO films. Shawn’s memoir, My Pet Virus, was published by the Penguin Group in 2006, and he just finished writing a screenplay based on the book.

James Luck, Jr., MDJames V. Luck, Jr.’s involvement with Los Angeles Orthopae-dic Hospital began in 1959 as a high school volunteer. He at-tended Wesleyan University and then the University of South-ern California for his M.D. degree and completed his residency in Orthopaedic Surgery at Los Angeles Orthopaedic Hospital. His fellowships were in the areas of adult reconstruction and musculoskeletal tumors. From 1989 to 2011, Dr. Luck was Presi-dent, Chief Executive Officer, and Medical Director of Los An-geles Orthopaedic Hospital. He served as residency Program Director of the combined UCLA/Orthopaedic Hospital De-partment of Orthopaedic Surgery at the David Geffen School of Medicine at UCLA from 2005 to 2014, where he is currently Professor in Residence. From 2000 to 2011 he served as a Direc-


tor of the American Board of Orthopaedic Surgery. He served eight years including two as Chairman of the Residency Re-view Committee and also served on the Boards of Directors of the American Academy of Orthopaedic Surgeons, the Ameri-can Orthopaedic Association, and the California Orthopaedic Association. He currently is Chairman of the National Medical Advisory Board of Shriners Hospitals for Children. Dr. Luck received Orthopaedic Teacher of the Year Award and Special Resident’s Award for Excellence in Teaching and Twinned Centers of the Year presented by the World Federation of He-mophilia, He was granted Humanitarian of the Year awards by California Hospital and the Crippled Children’s Guild. In 2013, Dr. Luck received the Lifetime Achievement Award from the World Federation of Hemophilia. Dr. Luck and his wife Mary have one son, three daughters, and five grandchildren.

James RomanoSince 2005, James Romano has served as the Director of Gov-ernment Relations and Advocacy for Patient Services, Inc. (PSI). James worked with Dr. Dana Kuhn to develop the Government Relations Department to promote access to treatments and therapies for patients with chronic and catastrophic illnesses through public and private health insurance coverage. James has spent his life advocating in the hemophilia Community. He has three uncles and two cousins with hemophilia. James is the fourth generation to advocate with the hemophilia community. In 1995, James began his career in advocacy lobbying for the Ricky Ray Hemophilia Relief Fund Act when he was 19 years old. After college, James worked on Capitol Hill for a Member of Congress for 5 years and at a health care lobbying firm—where he represented the Hemophilia Federation of America (HFA). James has his BA in Political Science from Marymount University, an MA in Public Administration from George Ma-son University, and he is currently working on his MBA from The University of Mary Washington. James currently resides in Fredericksburg, Virginia with his wife Carolee and daugh-ters Rachael, Erica and Ashley—who he is training to be the fifth generation to advocate for the hemophilia community in his family.

Janel Johnson-Momyani, MPA HFA Advocacy ManagerJanel Johnson-Momanyi works as an Advocacy and Programs Manager at HFA. Janel has been involved with HFA and the bleeding disorders community since 2008. She received her MPA degree at Baruch School of Public Affairs in NY and B.S. in Psychology at Coppin State University in Maryland. Janel enjoys empowering and learning from members of the com-munity.

Janet Chupka, RN, BSNJanet is a graduate of the University of Wisconsin-Milwaukee with a Bachelor of Science degree in Nursing. Upon comple-tion of her nursing degree, she worked for UWM in community health and as a mentor for undergraduate nursing students. She has worked in a variety of health care fields including: geriatrics, administration, management, urgent care, and most recently wellness. Janet began with Hemophilia Federation of America in October of 2011 to contribute to and help promote the FitFactor program; a special online fitness and nutrition project. She currently manages both FitFactor and Blood Sis-terhood Programs at HFA. She resides in Wisconsin, with her husband, John, and their three children.

Jim DrewJim Drew and his team are experienced access strategy and patient advocacy professionals, and they currently oversee cross portfolio patient support programs offered by Gilead Sci-ences, Inc. Team responsibilities span call center operations and case management services including: insurance cover-age investigation, triage assistance to financial support offer-ings, and free product programs designed for the uninsured and underinsured. Prior to his responsibilities at Gilead, Jim led Genentech’s Access Solutions reimbursement planning and program management team, and he further developed his broad understanding of patient support services and managed markets while working with companies including Ascension Health, Eli Lilly and Company, and Express Scripts, Inc. Jim and his family are from Indiana and they are currently living in California. While in Indiana, Jim received his Bachelor of Arts Degree from Indiana University and a Master’s in Business Ad-ministration from Butler University.

John BrunoJohn Bruno is a father of two. He has a three-year-old son, Al-exander, who has severe hemophilia A with an inhibitor, and a 7-month-old daughter, Annabelle. He has worked at Raytheon for seven years and is currently in the Environmental Test De-partment. John. He is also very involved in the union where he is a steward for I.B.E.W. Local 1505. John is the co-owner of a martial art school and teaches Taekwondo and Krav Maga. He has been involved in martial arts his entire life and has been teaching for 18 years. He recently started a company with a friend called Old Iron Beard Co. making beard care products. John is also very involved in charity. He is in his 6th year serv-ing on the board of directors at the Methuen Knights of Co-lumbus. He joined the New England Hemophilia Association Board about a year ago. He is on the board for a new start up non-profit called A Bump in the Road. He also is a co-found-er and leader of Beards for Bleeders. John and his wife, Diane,


started a group called Missing Factor in 2012 doing fundraisers and donating all money to HFA and NEHA. They have orga-nized numerous events for hemophilia including March Mad-ness brackets, Hemo Hunt (scavenger hunt on party buses), card tournaments, polish horseshoe tournaments, Brew Fest, road races, etc. If you would like to know more about any of these events please feel free to contact him and he would be happy to talk to you.

John Reed, DrPHJohn is a Factor VIII (severe) hemophiliac born in Oklahoma in 1959. He received his B.S. in Pharmacy from the University of Oklahoma in 1984 and was later awarded a Doctor of Pharma-cy degree from the Oklahoma State Board of Pharmacy. From 1984 to 1994, he worked in retail business in S.E. Texas, and as owner of his own business, J & S Drugs, for seven years. In 1995, after returning to Oklahoma, he started Cyril Home Care Pharmacy, an infusion service that specializes in clotting disor-der products. John also does part-time work in retail pharmacy and has a national certification in Immunizations and Vac-cines. John has held positions of varied responsibility in the hemophilia community: as a liaison for the CCG and the ACTG (Aids Clinical Trial Group), president of the Oklahoma Hemo-philia Foundation, Principal in People with Bleeding Disorders and HCV, chairman of various committees, and an active par-ticipant in the Blood Brotherhood of at the HFA. Currently, he serves as the Co-Chair of the Blood Brotherhood Committee and has enjoyed working with the staff and committee. John was married in 1978 to Sherrel; they had two children. After Sherrel’s passing in 2008, he married Carol Jean, a longtime friend of theirs. They enjoy running the business, as well as their extended family of 6 children and 16 grandchildren, and many volunteer activities.

Justin LevesqueJustin specializes in the critical analysis of images and their impact on social norms and community expectations. He lives in Portland, Maine where he runs his own design studio, Shop Geometry. He also serves as Creative Director for The Hemophilia Alliance of Maine and is Co-Director of the FOLX program which celebrates and acknowledges creativity in the bleeding disorders community.

Katie Verb, JD HFA Advocacy ManagerPrior to joining HFA, Katie was a member of the government affairs team at the Toy Industry Association. Before turning her interest to policy and advocacy work and moving to Wash-ington, D.C., Katie worked in Chicago for a nonprofit that ed-ucated and prepared women to run for office. She also helped found a nonprofit that provided educational and mentoring

opportunities for women in the business world. Katie earned her law degree from Michigan State University in 2008, and has a B.A. in Political Science from Loyola University Chica-go. Having a family history of hemophilia, Katie is excited to be working with HFA as an advocate for the bleeding disorder community.

Kimberly Haugstad, MBA HFA Executive DirectorKimberly is the Executive Director for Hemophilia Federation of America and brings a commitment to collaboration and re-sults in building individual strengths and community based advocacy. Since joining HFA, she has been strategically fo-cused on developing the organization to meet today’s bleed-ing disorders community needs. In 2008, Kimberly relocated HFA’s main office back to Washington DC and increased pub-lic policy and advocacy efforts, coinciding with the Affordable Care Act’s development and passage into law. During her time at HFA, Kimberly has grown and developed staff and volunteer teams who have improved and increased visibility of HFA pro-grams and services as well as created measurable and positive outcomes for people with bleeding disorders. Prior to joining the HFA, Kimberly spent more than 15 years in a variety of corporate management and consulting roles building and de-veloping people and organizations. Her volunteer leadership history includes service on several boards and advocacy com-mittees both locally and nationally in and outside of the bleed-ing disorders community. Kimberly holds an MBA and has two young children, one with severe hemophilia.

Laura GrayLaura Gray is the Projects Director of the Boston Hemophil-ia Center (BHC). She was the BHC social worker for over 10 years in both the adult and pediatric center. She is the prima-ry author of two books based on oral histories. The first, “The Gift of Experience,” by Laura Gray and Christine Chamberlain, was written to capture the experiences of men with hemophilia who were born before 1965, as well as caregivers who treated hemophilia during the 1970s and 1980s. The book is a resource for the bleeding disorders community who want to have an un-derstanding of the history of the disease and how it affected lives. The second, “The Gift of Experience II,” by Laura Gray, Ziva Mann and Allie Boutin, was written for families with new-ly diagnosed or young children with hemophilia. This book explores what it’s been like for parents from the BHC to raise their children from birth to age 6 and provides encouragement, hope, and practical tips to families embarking on their own he-mophilia journey. Laura is working on a third book in this se-ries, “The Gift of Experience III,” that explores what it is like for young adult men living with hemophilia today. The Gift of Experience I and II are both available on Amazon.


Lauren Neybert, MSW HFA Associate Director of ProgramsLauren Neybert works as the Associate Director of Programs at HFA, specifically working with the Helping Hand, Blood Broth-erhood, and Young Adults Programs. Lauren has been involved with HFA and the bleeding disorders community since 2010, delivering educational and social support programming. Prior to working in the bleeding disorders community, she has advo-cated and provided educational programming to persons ex-periencing homelessness, survivors of domestic violence, and older adults. Lauren is a social worker and received her MSW at The Catholic University of America in Washington, DC and BSW at the University of Iowa in Iowa City, IA. Lauren lives and works from in Illinois.

Linda (Lew) Wyman-Collins, BSN, RNC-NIC, BSN, RNCLew is a career nurse currently employed at the Medical Cen-ter of Lewisville in Lewisville, Texas. She has also worked at George Washington University Hospital in Washington, DC, Greater Southeast Hospital (DC) and the University of Mary-land Hospital in Baltimore. Lew has vast experience as a float pool nurse and then more advanced training as a neonatal in-tensive care nurse. She been a charge nurse for 30 years and has educational and management experience. Lew has extensive personal and professional experience in the care and manage-ment of hemophilia and other blood-clotting disorder patients. She volunteers on local and national boards of organizations involved in the education and advocacy of those affected by bleeding and clotting disorders. She has been a champion of health care issues on the state and national level for the past twelve years. Lew is a guest speaker at local and national meet-ings and has volunteered as a nurse and educator at various summer camps for children and adults in Connecticut, North Carolina, Virginia, Maryland, and Texas. She is on the Working Group for Females with Bleeding Disorders of the Centers for Disease Control and Prevention.

Luisa Stamm, MDDr. Luisa Stamm is the Associate Director of Clinical Research at Gilead Sciences. Dr. Stamm came to Gilead Sciences two years ago from Massachusetts General Hospital where she was an infectious disease physician. While at Gilead, she has worked as study director and medical monitor on clinical tri-als with Sovaldi and Harvoni focusing on special populations including patients with renal insufficiency, HIV/HCV co-infec-tion, and also the current ongoing trial for patients with bleed-ing disorders.

Mark AntellMark Antell has mild-moderate hemophilia A, and, until recent-ly, hepatitis C. Effective, low side-effect drugs became available at just about the same time that Mark experienced severe HCV symptoms. After 12 weeks of therapy, he is now cured of HCV. Mark currently serves as the Co-Vice President of the HFA Board of Directors. He is active in his local hemophilia chap-ter (Hemophilia Association of the Capital Area); but spends deep winter and summer with his partner in the central valley of Costa Rica. Mark saw far too many of us sinking from HCV, or experiencing severe side effects from HCV therapy that fre-quently did not work. He, along with Paul Brayshaw, HFA’s Past President, established an informal group, “People with Bleed-ing Disorders and HCV.” That group lobbied FDA, pharmaceu-tical developers, patient advocates, and others to incorporate urgency in activity related to development and access to more effective therapies for HCV.

Meg Bradbury, MS, CGC, MSHSMeg Bradbury is a Senior Genetic Counselor at GeneDx, a genetic diagnostic testing company. Meg also serves on the National Hemophilia Program Coordinating Center Genetics Work Group, and is also a Board Member of the Hemophilia Association of the Capital Area. Meg joined GeneDx as a Senior Genetic Counselor in the spring of 2013. She received her Medi-cal Genetics degree from the University of Wisconsin-Madison in 2005. Prior to joining GeneDx, she worked as a genetic coun-selor at Children’s National Medical Center, in Washington DC where she was part of a neuromuscular multidisciplinary clinic, and also coordinated and developed multiple research studies. She went on to get her Masters in Clinical and Translational Research at the George Washington University in 2013 with an interest in health communication and genetic testing for bleed-ing disorders, using a mixed method approach. She is a member of the National Society of Genetic Counselors and the Personal-ized Genomic Medicine Special Interest Group.

Michael PezzilloMichael Pezzillo is a Chief Instructor for Mastery Martial Arts in Rhode Island. He has trained in the martial arts for 19 years. Although he does not have hemophilia, it has affected him personally as his two brothers were born with it. Michael shares, “Growing up with Richard and Anthony and watching the challenges, pain, and limitations they endured, motivated me to find a way to make people with hemophilia have some kind of normalcy in their lives.” Michael finds the martial arts to be both rewarding and challenging. He is thrilled to bring the martial arts to the bleeding disorders community because he believes it builds confidence in students of all ages, races, and with different physical abilities or limitations.


Michelle MorathMichelle Morath is the owner of JourneyFit, LLC, www.jour-ney-fit.com, in Albuquerque, New Mexico. She is currently en-rolled in the Doctor of Naprapathy program at the Southwest University of Naprapathic Medicine. She was awarded a Bach-elors of University Studies degree with emphasis in Exercise Science and Business, summa cum laude at the University of New Mexico during May 2010. Michelle has been a nation-ally Certified Personal Trainer since 2003 through National Strength & Conditioning Association and since 2004 through National Academy of Sports Medicine. She is certified as a Corrective Exercise Specialist through National Academy of Sports Medicine, certified in Heart Zones Levels 1 & 2, and CPR and AED certified. Her additional credentials include Dr. Sears Certified Health Coach and Reiki Level I Practitioner. Michelle has experience working with clients dealing with past injuries, mature adult clients, and clients in physical pain. She takes a gentle approach which includes helping people manage their pain through movement and proper nutrition. Michelle strong-ly believes that, through appropriate exercise and nutrition, anyone can improve their quality of life and rejuvenate.

Mike Soucie, PhDDr. Soucie is an epidemiologist and has been working at the Centers for Disease Control and Prevention for 20 years. The focus of his work has been the development of surveillance systems for people with bleeding disorders. Analyses of data from these systems are used to assist in the development and evaluation of public health interventions to prevent or reduce the complications associated with these disorders.

Patrick James LynchPatrick James Lynch is an actor/producer/writer living with se-vere hemophilia A. He is the co-founder of the digital content agency Believe Digi, through which he created the hemophilia comedy web series, “Stop The Bleeding!” (Recipient: National Hemophilia Foundation’s 2014 Loras Goedken Award; Recip-ient: Hemophilia Federation of America’s 2013 Terry Lamb Award). Through Believe Digi, he’s also written and produced “Helping Hany” - the stop-motion, animation series about a girl with VWD, produced & hosted “Breaking Barriers” - a teen goal-setting workshop, and continues to produce and host the inspirational speaker series titled “Powering Through.” He is the board president of the new 501(c)(3) Entertainment 2 Af-fect Change, through which he will make his feature film di-recting debut this summer shooting a documentary about Paul Newman’s Double H Ranch, an organization for children and families affected by life-threatening illnesses. Patrick’s work in hemophilia has been featured on outlets such as PBS, FOX, and Buzzfeed.

Paul Brayshaw, MPHOriginally from Colorado, Paul relocated to Washington D.C. over 15 years ago as a grassroots advocate and to seek legis-lative support for issues important to the hemophilia commu-nity, particularly the Ricky Ray Hemophilia Relief Fund Act. Following two years as a staffer for a U.S. Congressman, he worked in the Ricky Ray Program Office in the U.S. Depart-ment of Health and Human Services assisting with compas-sionate payments for three years and where he was awarded the Secretary’s Award for Distinguished Service. Paul has con-tinued to work in the health sector, and has been employed by Factor Support Network Pharmacy since 2003.

Richard Pezzillo, HFA Communications DirectorRichard Pezzillo is the Communications Director for the He-mophilia Federation of America. Prior to joining HFA, Richard was the Deputy Press Secretary for Senator Sheldon White-house of Rhode Island. Richard has hemophilia and over 15 years of leadership experience working with the bleeding dis-orders community. He is the former co-chair of the National Hemophilia Foundation’s (NHF) National Youth Leadership Institute (NYLI) and is the recipient of the NHF Ryan White Meritorious Service Award. Richard earned his undergraduate degree in 2008 at Western Connecticut State University and currently resides in Rhode Island.

Robert Sidonio, Jr., MD, MSc.Dr. Sidonio’s interest in hemostasis began during his pediatric residency at the University of Louisville under the mentorship of Dr. Sanjay Ahuja. Subsequently under Dr. Margaret Ragni’s research guidance during his fellowship he was accepted to the ASH Clinical Research Training Institute (CRTI) in 2009. Following fellowship at the University of Pittsburgh, he took a position as Director of Pediatric Hemostasis and Thrombosis Program at Vanderbilt University. Under Dr. Michael DeBaun’s mentorship, he was able to obtain to obtain a KL2 to investi-gate the bleeding tendency in hemophilia A carriers. In August 2014, Dr. Sidonio accepted the position of Associate Director of Hemostasis and Thrombosis at Emory University/Children’s Healthcare of Atlanta. Dr. Sidonio is continuing his clinical re-search investigating the bleeding phenotype and genotype of hemophilia A carriers funded by the Hemophilia of Georgia Clinical Scientist Development Grant and HTRS Mentored Re-search Award.

Ryan GielenRyan Gielen is an independent filmmaker and producer. Pro-ducing credits include “The Graduates,” in the top ten come-dies all time on Hulu (2010 feature film), “Turtle Hill, Brook-


lyn” (2013 feature film, Audience Award for best Best Narrative, NewFest), “Stop the Bleeding!” (web series), and “Helping Hany” (web series). Ryan’s films have won awards for writing and direction in festivals around the world, and he’s a two-time WEBBY winner for his interactive web series “Deleted: The Game.” Ryan is a contributor to NoFilmSchool.com, Sundance Film Festival Artist Service’s Blog, and Tribeca Film Fest Blog. Ryan and his brother Matthew are the co-founders of DVD’s to the Troops, an organization dedicated to collecting and distrib-uting used and new DVD’s to American military in war zones around the world.

Sharon Ingram, MS, HS-BCP, CWHCSharon Ingram is a Board Certified, Licensed Human Services Practitioner as well as a Certified Wellness & Health Coach. Sharon earned a Bachelor’s of Science degree in Human Ser-vices, specializing in Mental Health Counseling, and a Master of Arts degree in Human Services Counseling, specializing in Health and Wellness. While attending Liberty University, Sharon’s heart was profoundly touched as she gained a global worldview, which defines population health as going beyond public health and considers the distribution, determinants, in-terventions, and policies that impact health outcomes across a broad population. Called to advocacy and outreach in the hemophilia community, Sharon along with her husband, War-ren, who has severe hemophilia, has served this community for over 16 years. Sharon’s love for the bleeding disorder commu-nity and individuals diagnosed with a chronic illness is evident by her ongoing volunteerism, recognition by Hemophilia of North Carolina as Volunteer of the Year for 2014, and a well-ness coaching service catering to and supporting personalized issues. For the past five years, Sharon has faithfully facilitated spouses and partner groups at national Symposiums. Sharon and her family live in North Carolina.

Sharon L. Meeks, MD Dr. Shannon Meeks is an Assistant Professor of Pediatrics at Emory University and Children’s Healthcare of Atlanta. She at-tended Duke University where she graduated with a Bachelor of Science in mathematics and was a member of Phi Beta Kappa before continuing on to medical school at the University of Mis-sissippi. During her training she developed a strong interest in hemophilia and now has a basic, translational, and clinical fo-cus on the immune response to factor VIII in hemophilia A.

Sonji Wilkes, HFA Programs ManagerSonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volun-teerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji has volunteered exten-

sively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. She is currently working with HFA as a program man-ager for HFA’s Families Programs and writes for HFA’s weekly Mom’s Blog, “Infusing Love.” Sonji, her husband Nathan, and three children: Nora, Thomas, and Natalie, reside in Colorado.

Stanford MurrayStanford Murray is a proud husband to Nikita, and a father of three children: sons Jecorei and Evan, 18, who both have severe hemophilia A and daughter Kahliya, who is a carrier. Stanford is originally from Chicago, but now resides in Tennessee. He has served on several boards and committees, both nationally and locally. These include the National Hemophilia Founda-tion, Tennessee Hemophilia and Bleeding Disorder Founda-tion, and HFA’s Board of Directors. For the past few years, Stan-ford has been one of the driving forces behind improving and expanding HFA’s Dads in Action program. Stanford’s personal mission is to provide support and assistance to individuals and families with bleeding disorders. He has a special interest in building a network of information and support for dads.

Stephen Fitzmaurice, MPS HFA Communications & Advocacy CoordinatorBefore becoming HFA’s Communications and Policy Coordi-nator, HFA, Stephen managed the telecommunications port-folio for the People for the American Way Foundation’s Young Elected Officials Network. Stephen has also handled commu-nications for senior Florida Senator, Bill Nelson, both in his Senate office and on his reelection campaign. A Florida native, Stephen holds a bachelor’s degree from the University of Flori-da, and a master’s degree in legislative affairs from the George Washington University.

Steven Walker, MSMr. Steven Walker is Co-Founder of the Abigail Alliance for Better Access to Developmental Drugs. His responsibilities include regulatory and legislative efforts, scientific direction, advocacy for patient’s’ rights, spokesperson for the alliance on regulatory and scientific issues, and author of papers, articles and editorials written to educate the public regarding the Al-liance’s positions and initiatives. Mr. Walker became an advo-cate for patients suffering from serious and life threatening dis-eases as a consequence of his wife’s (Jennifer I. McNeillie, B.S., Biology; M.S. Marine Science/Geology; P.G.) diagnosis with advanced cancer in December 2000. He recognized the need for scientific and regulatory change in September 2001 after learning first-hand of the serious problems with FDA’s drug development, approval, and access policies. Mr. Walker joined with Abigail Alliance Founder and President, Frank Burroughs in December 2001 and initiated the Alliance’s efforts focused


on FDA reform and patient’s’ rights. Mr. Walker conceived and authored the Tier 1 Initial Approval proposal that formed the basis for the Abigail Alliance’s Citizen’s Petition submitted to FDA in June 2003, and for the Access Act introduced in three sessions of Congress. He provided scientific, regulatory, and factual support for the Abigail Alliance’s lawsuit against the FDA (Abigail Alliance v. von Eschenbach) and has authored articles on the subjects of patient access to investigational therapies, the rights of seriously- and terminally-ill patients to access medical progress, modernization of drug development and approval science, and FDA reform. He has provided testi-mony to the Institute of Medicine and the House Committee on Energy and Commerce. Mr. Walker is a volunteer advocate and receives no compensation for his work in patient and reg-ulatory advocacy.

Sue Geraghty, RNMs. Sue Geraghty has an Associate of Arts degree in nursing from Lander College in 1977, a Bachelor of Science degree in Nursing in 1980 from University of North Carolina at Charlotte in 1980 and a Master’s in Business (MBA) from University of Colorado Denver in 1990. She worked as Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombo-sis Center for 25 years where she retired in 2013. Currently she is working as an independent consultant in the areas of hemo-philia and health care education. Prior to that Ms. Geraghty worked in orthopedics where she was initially introduced to patients with hemophilia. She is certified as an Orthopedic Nurse Clinician through the National Association of Ortho-pedic Nurses where she is still an active member. During her time as nurse coordinator at the Hemophilia Treatment Center she has sat on a number of national committees including the nursing working group for the National Hemophilia Founda-tion. She has spoken locally, nationally, and internationally and has been published in many peer-reviewed journals. Her areas of interest within the hemophilia community include the adult patient with bleeding disorders, patients with inhibitors, and orthopedic issues.

Tim AndrewsTim Andrews creates paintings that explore issues of identity and self-representation as self-expression. His work chronicles the personal and societal ramifications of having lived for 54 years as a person with hemophilia and having lived thirty plus years with HIV and HCV. His self-portraits are a record of how he journeys through this reality and speaks to an unwavering will to survive. He lives in Tennessee.

Wendy Owens HFA Principal Investigator and Project ManagerPrior to joining HFA as the Principal Investigator/Project Man-ager for the CHOICE Project, Wendy was the Executive Coor-dinator for New England Coalition for Affordable Prescription Drugs (NECAPD). Her initial experience with the hemophil-ia community was as the Advocacy Coordinator for the New England Hemophilia Association. Wendy began her career in the private sector starting and running several companies, in-cluding an advance composite materials engineering firm with technology patented around the world. For the past 11 years, Wendy has been an advisor to US Secretary of Commerce and US Trade Representative on Information and Communications Technologies, Services, and Electronic Commerce as a mem-ber of an Industry Trade Advisory Committee (ITAC-8). Wen-dy lives in the greater Seattle area with her family.

Ziva Mann, MAZiva Mann, MA is the Patient Lead for Cambridge Health Al-liance, where she represents 100,000 patients. In that role, she works to guide visioning around patient partnership in health and improvement for the transition to person-centered health and healthcare for a diverse and underserved community of patients. She supports the patients and family members who serve on each of CHA’s primary care practice improvement teams (PITs), doing the work of system redesign and quality improvement in an atmosphere of collaborative learning. Ziva also consults with Harvard Medical School’s Center for Prima-ry Care, where she guides patient partner engagement in pri-mary care improvement work for 21 primary care clinics. Ziva previously worked in education for the bleeding disorder com-munity, as editor and author of many articles. She is the author of a children’s book, Just A Boy, written for children with bleed-ing disorders and their parents, editor of a collection of essays, co-author of Gift of Experience 2: Conversations with Parents about Hemophilia, and editor of HFA’s Dad’s in Action essay collection. Ziva lives in Massachusetts with her husband, Ezra, and her two somewhat improbable sons, Shai and Akiva.


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