h e a r m y v o i c e p r o g r a m - lbbc.org 2017 hmv intros and... · 417-781-2656...
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C A T H E R I N E
O R M E R O D ,
M S S , M L S P F A C I L I T A T O R
Living Beyond Breast
Cancer
40 Monument Rd. #104
Bala Cynwyd, PA 19004
484-708-1541
As LBBC’s Vice President, Programs and Partnerships,
Cathy is responsible for overseeing the implementation
of all LBBC’s programs and partnership initiatives. This
includes leading efforts that increase public awareness
of LBBC’s mission, overseeing the development and
implementation of educational programs and services
for those affected by breast cancer, and developing
LBBC’s relationship with new and existing partner or-
ganizations and companies.
Cathy has more than 25 years of experience in the non-
profit and academic sectors, especially in the areas of
communications, leadership training and program and
organizational development. She is the founding direc-
tor of the Nonprofit Executive Leadership Institute at
Bryn Mawr Graduate School of Social Work and Social
Research and of the Vision 2020 women’s leadership
initiative at Drexel University College of Medicine. Cathy
is very familiar with LBBC and its mission, having
worked as LBBC’s director of educational programs
from 1999 to 2001.
A mother of two grown children, Cathy is also an avid
fiction reader, and theater and movie aficionado. She
has taken a break from her competitive dragon boat
team, but hopes to be back on the water in 2018.
20
17
I N T R O S & C O N T A C T I N F O
H E A R M Y V O I C E P R O G R A M
J O A N N A F A W Z Y
M O R A L E S , E S Q . F A C I L I T A T O R
Triage Cancer
424-258-4628
www.TriageCancer.org
Joanna is a cancer rights attorney, au-
thor, speaker, and CEO of Triage Can-
cer, a national nonprofit organization
connecting people to cancer survivor-
ship information and resources through an international speak-
ers bureau, educational events, and online tools. She also serves
as Principal of North Star Alliances, a business and nonprofit
consulting and service firm.
She has spent more than twenty two years working on behalf of
individuals with cancer, including five as an Adjunct Professor of
Law at Loyola Law School, teaching a seminar in Cancer Rights
Law, and eight at the John Wayne Cancer Institute’s Psychosocial
Care Program and Positive Appearance Center.
In addition, she serves on numerous cancer community commit-
tees and boards, including as Immediate Past Chair of the Board
of Directors for the California Division of the American Cancer
Society, the National Advisory Board of CancerForward, the Stu-
pid Cancer Survivorship Advisory Council, and the Executive Com-
mittee of the American Bar Association’s Breast Cancer Task
Force.
She has been published in a variety of publications, such as Psy-
cho-Oncology, Coping with Cancer, Women, and Ability Magazine.
In 2009, she also contributed to a book entitled, “Work and Can-
cer Survivors.”
She has received numerous awards and recognition for her ser-
vice to the cancer community and her work in the area of legisla-
tive advocacy, such as the 2009 Susan G. Komen for the Cure®
Public Policy Advocate of the Year. In 2010, she was also recog-
nized by the Los Angeles Daily Journal as one of the Top 20 Attor-
neys in California Under the Age of 40.
HMV Volunteers
A N D Y S E A L Y Philadelphia, PA
610-999-6989
I was diagnosed with Stage I Invasive Breast Cancer on 1/24/17. I went through the genetic testing,
fertility testing, met with the surgeons and had my double mastectomy on 3/8/17. I found out that
11 of my 13 nodes that were removed were positive, upgrading me to Stage III. After a few weeks I
had my bone and CT scans which showed that I have a tumor on my right hip and my L2 spine, indi-
cating that I was indeed Stage IV. So here I am! Right now I am on Lupron and Zometa every 3
months and Tamoxifen and Effexor XR daily. I get scanned every 3 months (next scans are 9/11/17).
The tumor on my back was a little wider at my scan in June so I may need to have my treatments altered after my September
scans, if the tumor(s) has continued to grow. Before all of this, I was just coasting along. I mean, I was 36, single, and without
children at the time of diagnosis. It's only been about 7 months but I've adjusted to my "new normal" fairly well. I just wish to
learn as much as I can about Metastatic Breast Cancer so that I can educate because, before this, I thought "Stage IV" meant
a quick death. I now know that I can thrive for many years!
A P R I L D O Y L E Visalia, CA
559-972-5576
Hello from California! I am April Doyle, a 39 year old single mother from Visalia, CA. I was first diag-
nosed with stage 1b intraductal carcinoma in 2009. After a bilateral mastectomy and sixteen weeks
of chemotherapy, I thought all of this was behind me. At my five year check up, I found out my cancer
had returned and metastasized. I have been living with stage iv metastatic breast cancer since Au-
gust 2014. My son is my miracle and we live a fairly normal life. It's a new normal, but I continue to
work full time, volunteer at his school, and read as many books as I possibly can. I am also a team
member at The Underbelly magazine, helping others to live and cope with their diagnosis. I believe that even with this disease,
there is still a full life to be had. I am so excited to be a voice for LBBC.
B E T H L E H M I E R Moon Township, PA
412-519-8348
Hello! I have been married to my husband Chris for 12 years, but we have been together for 18
years. I graduated from Robert Morris with a Bachelor's degree in Marketing in 2007. We live in the
suburbs of Pittsburgh, PA minutes from the Pittsburgh International Airport. We have one very smart,
intelligent, and lovable Shetland Sheepdog Jake and a lovable hamster Jim. We love our Steelers,
Penguins, and Pirates too! On Sundays you can find us at St. Catherine of Sienna Parish. Chris and I
have one child, Kennedy who turns 9 in November. Kennedy was only 15 months old when I found
my first lump on Valentine's Day. I will be honest, I never did the whole self breast exam prior to diagnosis, but now I realize
just how important they are and how lucky I was to have found my lump on my own especially with the rise in breast cancer in
patients at alarmingly younger ages.
C A R A G E N T I L E
St. Petersburg, FL
813-713-1341
Hi! My name is Cara Gentile, and I hail from the Tampa area, by ways of Miami Beach. My first bout
with breast cancer, was in April 2007. Symptoms of my recurrence started in fall 2010. I was finally
diagnosed in June 2011, with mets to my spine, and lymph nodes. I am a teacher who can't teach
anymore. Side effects from meds forced me to quit teaching in April 2013. After leaving work, my
mom and I moved to Tampa so I could go to Moffitt Cancer Center. I have spent a lot of time since
then doing jigsaw puzzles, beading, needlepoint, and other crafts. Neuropathy has made it harder
to do my crafts, so I spend a good amount of time on the internet now.
C A R R I E W Y M A N La Plata, MD
910-459-2051
Hi I'm Carrie Wyman. Was originally Stage 3 A triple-negative in May of 14. Was diagnosed with Stage
4 reoccurrence to the super clavicular nodes in May of 17 changed to ER pos. I'm hobby actress and
most of all ,love my family . My husband has been my greatest strength . I enjoy telling my story and
helping others. I want to help others to live beyond the fear of diagnosis .
C H E R Y L F U E N T E S Alexandria, VA
703-899-9655
Cheryl Fuentes lives in Alexandria, VA with her husband and three children, ages 17, 15, and
10. She works for a local government agency as a parent educator . She has a Masters in Linguis-
tics from Georgetown University and a BA in Social Sciences from Michigan State University.
E L A I N E P R E J E A N Houston, TX
832-563-5561
I'm Elaine Prejean a 3X Breast Cancer Survivor - Thriver. My first diagnose of Breast Cancer- HER2+,
August 2008, second, June 2011, 3rd, Metastatic Breast Cancer (Lung) March 2015. Advocate for
Metastatic Breast Cancer. Single mom, adopted two girls at the age of 8 and 12 in the year of 2000.
I have one grandson, age 9. I volunteer at my church in the children's ministry, and Life Ministry
(Cancer Support Group). Love to eat salads, vegetables, creole food. It's an honored to have been
selected to be a part of Living Beyond Breast Cancer's Hear My Voice Outreach Volunteer Program.
I'm looking forward to meeting the group in Memphis.
E L L E N B R O G L I O Joplin, MO
417-781-2656
Ellen Broglio is a 57 year old wife, mother, and grandmother who was initially diagnosed with breast
cancer in November of 2014. She received a stage 4 diagnosis of “10+ tumors” metastasized to her
liver one year later. Through the wonders of modern medicine and the awesomely powerful miracles
of God, she is now No Evidence of Disease. Because the medical world considers stage 4 incurable,
Ellen is “living with breast cancer,” rather than spending her life dying from it. Ellen attributes her
good health to a series of interactions that occurred after her cancer diagnosis that made her aware
of possibilities other than dying of breast cancer. She hopes to get her message to others.
E S T E L L A B E A M O N N A S H Chicago, IL
773-456-4782
My first Granddaughter was born in May 2016, she and I bonded immediately. With the smell of a
newborn baby nuzzling against my chest, I felt a heaviness in my right breast. Odd I thought, maybe I
was lactating or maybe this was the start of menopause? After several months my right breast nipple
began inverting, no pain no lump just sucking into my chest. In October 2016, I was diagnosed with
HER2-negative MBC with positive lymph node and metastasis to my liver. While searching the inter-
net I found Living Beyond Breast Cancer site where I found the materials helpful, easy to read and
understand.
G E R A L D “ J E R R Y ” R U B E N S T E I N
Beachwood, OH
216-381-5143
Please call me Jerry; I was diagnosed in 10/2003 as stage 1, I was 41. I was told the cancer was not
going to comeback period. Well it did ten years later and has since spread and has resisted numer-
ous treatments. However, I continue to fight it as I have a lot to live for a wonderful wife of 30 years
and two grown daughters. I use to run over six miles every other day and lift weights. I cannot run
anymore but I still lift weights and try to keep physically active. I want to help bring more awareness
that men get breast cancer and that we need more research for metastatic breast cancer. In addi-
tion, more needs to be done to help those with cancer financially as cancer is very expensive to treat and one should really be
concentrating on fighting their cancer not dealing with bill collectors.
H E A T H E R D O N O H U E Germantown, TN
901-497-6129
Hi! My name is Heather Donohue & I live in Memphis, TN with my girlfriend, 15 year old son & a virtu-
al zoo of animals (dogs & cats). I also have a 20 year old daughter & about to turn 1 year old grand-
daughter. I am a Flight Nurse / Paramedic for a local helicopter service in this area. I was diagnosed
with breast cancer at age 42; my initial diagnosis was Stage IV with mets to my lymph nodes &
bones. That was 8 short months after I had my first ever mammogram, which was completely clear. I
like to read, camp, hike, do yoga & ride my bike. I used to run half-marathons but gave that up after I
was diagnosed with breast cancer. There are very numerous lesions in my spine & hip/pelvis area, so I don't want to jar those
bones excessively. I also like to help out with various animal rescue groups as much as I can. I recently started a peer support
group in this area for people with metastatic breast cancer & am in the process of trying to spread the word about that. I am
looking forward to meeting all of you soon!
J E S S I C A L E I P Framingham, MA
774-291-0464
Hi! My name is Jessica Leip and I was diagnosed with de novo Stage 4, triple positive MBC on my
37th birthday in 2013. I have innumerable mets to my liver, bones and spine and I'm on treatment
for the rest of my life. I enjoy life so much and don't take a second for granted with my young chil-
dren and husband. I make sure that I make it all count every single day. Living metastatic for over 4
years now has given me a greater appreciation for life and I truly believe it has made me a better
person.
K I M B E R L Y “ K I M ” H E R N A N D E Z Knightstown, IN
765-960-6690
I was diagnosed May 2015 Stage 4 MBC. I love flowers and cultivating them on my little piece of
God's green earth as well as mowing. I enjoy the company of my family and especially my grandchil-
dren. The Beach is my paradise and I Love to visit EVERY opportunity I get.
L Y N N C A R L S O N
Des Moines, IA
515-360-3008
I am Lynn Carlson, married to my husband John Schmidt for 32 years now. We have three grown
sons, a delightful Daughter in Law who moved from Ireland to marry my oldest and an adorable 11
year old grand-daughter. I live in Des Moines, IA and grew up in Bloomington, MN. I have had many
careers in my adult life starting as a Home Economics teacher, then sales management and most
recently Real Estate Sales. My passions are reading, sewing, shopping, family and most importantly
giving back to community and humanity.
M A R G O S A L E M
Oakland, CA
510-860-2870
Who is Margo Salem? An incredibly blessed woman living with stage 4 breast cancer that has metas-
tasized to my bones. At 45 I left corporate America after 20 plus years of service, taking one year off
to simply breathe, rest, travel and volunteer in my community. Not wanting to go back to being a su-
per commuter to Silicon Valley, I downshifted and began working as a contractor for the County of
Alameda; wherein every day I get to serve my community. Cancer came knocking just before my 49th
birthday, terrorizing and paralyzing me with breathtaking fear. After immersing myself in loving, car-
ing and compassionate support and assembling an amazing oncology team, I was able to begin breathing again and living my
life as before the diagnosis – with deliberate gratitude, joy and exuberance. Daily, I invite all around me to join me in con-
sciously embracing the here and NOW with gratitude.
M E L I S S A K A U F M A N Tarzana, CA
818-427-1008
Hi, I'm Melissa Kaufman. I was diagnosed in August 2014 after my 1st mammogram and had a lum-
pectomy and then a pet scan to find out I was stage 4 immediately after diagnosis. I enjoy going to
the movies and going on vacation to Las Vegas and San Diego. I love spending time with my dogs at
home when I have some free time also.
M I C H E L L E H A U S E R - W A L L A C E
De Forest, WI
608-279-5436
Hello Everyone! I am excited to participate in the Hear My Voice program. I was diagnosed with Tri-
ple Negative Breast Cancer (TNBC) in July 2015. Then, I was diagnosed with metastatic TNBC (spots
in lungs, lympnode questionable) in July 2016. Following the metastatic diagnosis, I started a clinical
trial with Eribulin and Keytruda (Pembrolizumab). I was on the trial until May 2017 when I started to
experience severe side effects. I am between treatments right now, not sure what the next treat-
ment will be just yet, and I still look at my glass as half full. I am blessed! I have a full life with a hus-
band, three sons, ages 15, 11, & 9, and a sweet chocolate lab! I love staging, interior design, and remodeling my golden oldie
home. I also look forward to being a grandma someday .... many years out in the future yet.
R E N A E B Y R E
Burlington, ND
701-721-0530
Renae L. Byre received her formal education at the University of Wisconsin – Green Bay. She ma-
jored in both Biology and Environmental Science. In 1993, she obtained a Master of Science degree
in Counseling and College Student Personnel at Oklahoma State University. Renae feels blessed that
she was able to remain at home as a stay-at-home mom until her three boys attended school. In
2004 she was diagnosed with breast cancer. After battling the treatment and disease she re-
evaluated her purpose in life. When the Tobacco Cessation Coordinator position opened at First Dis-
trict Health Unit, she realized her past educational, life, and work experiences added up to leading
her on this path. She has been working in tobacco prevention since 2005. In 2008, she became certified at Mayo Clinic as a
Tobacco Treatment Specialist. She is currently the Director of Health Promotions division at First District Health Unit in Minot,
ND. In 2009, Renae was diagnosed with metastatic breast cancer and has been undergoing various treatments since that
time. She enjoys spending time with her husband, 3 sons, friends and family, gardening, crafts and decorating. She strives to
live life from a humorous and positive stance.
S H A R O N B O R R E L L I
Weymouth, MA
Hello my name is Sharon Borrelli I live in Weymouth, MA alone, I lost the love of my life in 2003
from metastatic cancer. I am on disability since winter 2015. I was diagnosed with stage IIb breast
cancer ER+ in 1997 at 42 - I had a right mastectomy and reconstruction 5 out of 21 lymph nodes -
ACF chemo. 6 rounds and 30 days of radiation. My oncologist at the time said that after 10 years she
would "remove me from her Rolodex " since it was 10 years out I would be cured. In September
2012 I was diagnosed with stage IV metastatic malignant pleural effusion right side - April 2016 I
was diagnosed with brain mets. I continue to have side effects and the neurologist attributes to age
as I still have balance issues, headaches & exhaustion. I have in the past few years become an advocate for metastatic breast
cancer, reaching out to other patients via social media and sharing information to anyone & everyone with statistics and more
about metastatic breast cancer. I have a voice and passion for people to be educated about metastatic breast cancer for
rights to trials available, recognition and more.
S U S A N M U S H K I N
Sun Lakes, AZ
480-290-0222
My passions are learning, teaching, people, and making our world a better place. My two sons, four
grandchildren, and two kitties keep my heart full. Although I am a California native, I now live in Arizo-
na. I was originally diagnosed with Stage 2 BC when I was 48. Fast forward 22 years of thinking I was
cancer free, and I was diagnosed with Stage 4 MBC to bones, a few lymph nodes and lungs. I’m for-
tunate to have been accepted into a clinical trial at that time, taking abemaciclib and letrozole. Now,
more than two years, and 27 cycles later, tumors have reduced in size and I am stable. I love my out-
standing medical team, especially my oncologist whom I call Dr. Tall, Dark, and Handsome! I choose joy, laughter, and love as I
live each day. I won’t allow anything or anyone to dull my sparkle!
T R A C I E T Y S I N G E R Newport News, VA
757-503-3354
Diagnosed at 40, Wife and mother of two sons. I felt a lump below my right breast and went to the
doctor. He ordered a mammogram and the lump was immediately aspirated. I was told it was just a
fluid filled cyst. Not knowing any different, I went on with my week and the lump grew the size of a
golf ball. I went back to get a second mammogram and chose to get removal of the Mass. I was then
diagnosed with infiltrating ductal carcinoma of my right breast. Stage iv triple negative breast cancer
with nodules in my lungs. I am now in remission (NED) and get checked every 3 months. I volunteer
as a facilitator for a "Not your typical support system" HERE FOR THE GIRLS/ beyond boobs and pink
link- helping young women under 50. I am so blessed to have such an awesome tribe of boober sisters (yes! that's what we
call ourselves) that have been there for me through my long journey. I believe in the power of life, family, friends, love and help-
ing others. I know Whatever blows my way, it will just keep me growing stronger.
S U S A N R A H N Rochester, NY
585-857-4155
I live in Rochester, NY with my husband, my 18 yr old son Adam who begins college this fall and my
pup Bella. I was diagnosed with MBC de Novo in August 2013. I had mets to my spine and ribs. I’ve
had radiation for the mets, ovaries and tubes removed, and lumpectomy/partial mastectomy. While I
no longer work outside the home, I do keep very busy. I am one of the co-founders of The Underbelly,
an online magazine for all stages of breast cancer. I’m an active advocate for the MBC Community,
Outreach Coordinator for The Cancer Couch Foundation, a Patient Member of the Metastatic Breast
Cancer Alliance and most days on social media/blogging as my alter ego Stickit2stage4. And if that weren’t enough, I’m also a
storyteller in New York State for Compassion & Choices where we hope to be the next state to have Medical Aid in Dying laws.
V I C T O R I A “ T O R I ” G E I B Bellefontaine, OH
740-262-0760
Hi! My name is Victoria (Tori) Geib, and I am from Bellefontaine, Ohio. I was diagnosed with Metastat-
ic Breast Cancer (IDC ER/PR+, HER2- ) in March of 2016. Since then I have done mostly palliative
procedures and radiation. I also am currently on my 13th cycle of Ibrance and have been stable
since cycle 3. I have been doing advocacy on a local level and have an interest in reaching out to
people in more rural areas educating them on Breast Cancer and specifically young people with Met-
astatic disease.
Guest Presenters &
Staff
A R I N A H L U M H A N S O N A S S O C I A T E D I R E C T O R , O U T R E A C H & P A R T N E R S H I P S
Living Beyond Breast Cancer
484-708-1546
Arin is LBBC’s Associate Director of Outreach & Partnerships and also manages LBBC’s Young Wom-
en’s Initiative, where she oversees the development and execution of educational programs related
to premenopausal women diagnosed with breast cancer. Arin received her bachelor’s degree in
peace and global studies and women’s studies from Earlham College and her master’s degree in
public health in health behavior and health education from the University of North Carolina at Chapel
Hill. Arin lives in West Philadelphia and spends her time gardening, fighting squirrels and cooking
delicious vegetarian meals for friends.
I N G R I D M A P A N A O M A N A G E R , O U T R E A C H Living Beyond Breast Cancer
Bala Cynwyd, PA 19004
484-708-1808
I ’m a Silicon Valley native who is now living the East Coast life! At LBBC, I am responsible in assisting
in the implementation of our Young Women’s Initiative and Hear My Voice Metastatic Breast Cancer
Outreach Program. Even though I personally haven’t been diagnosed with breast cancer, my passion
is to work with underserved communities and in women’s health. My passion for helping others
stems from growing up in an unstable household during my childhood and teenage years. The sup-
port that I received from family, friends and mentors inspired me to pay it forward and do the same for others. During my free
time I love cleaning and organizing, having great conversations with friends over brunch and laying around at the beach!
J A N I N E G U G L I E L M I N O S E N I O R D I R E C T O R , P R O G R A M S & P A R T N E R S H I P S
Living Beyond Breast Cancer
484-708-1542
Janine oversees the implementation of LBBC’s programs, publications and research initiatives. In
this role, she contributes to the content and design of all core LBBC activities. She has authored hun-
dreds of articles on the medical, psychosocial and practical concerns of people affected by breast
cancer. Janine is also proud to co-represent LBBC on the Metastatic Breast Cancer Alliance. She
lives in suburban Philadelphia with her husband and son, two dogs and two cats.
L Y N N F O L K M A N M A N A G E R , C O M M U N I T Y E N G A G E M E N T
Living Beyond Breast Cancer
484-708-1545
Lynn is the manager of community engagement, and that includes everything and all volunteer relat-
ed. She manages and implements the LBBC’s national volunteer initiatives including the Breast Can-
cer Helpline and the Community Connector volunteer program. Lynn was introduced to LBBC shortly
after she was diagnosed with breast cancer in 2009. While she was in active treatment, she attend-
ed the fall conference and was drawn to the empowering nature of the LBBC mission. She became a
Breast Cancer Helpline volunteer and then joined the staff in 2012. Lynn lives in Center City Philadel-
phia with her husband and enjoys walking, writing, reading, spending time with her cats and spiritual exploration.
J E S S I C A B E T T S A S S O C I A T E D I R E C T O R , D E V E L O P M E N T
Living Beyond Breast Cancer
484-708-1807
Jessica is responsible for assisting in creating and executing fundraising strategies in support of
LBBC’s mission. This includes the execution of our organization’s signature fundraising events,
LBBC’s Reach & Raise, and the annual gala, The Butterfly Ball. She also develops strategies for na-
tional expansion of development and fundraising efforts, including the DIY events and other grass-
roots marketing and team fundraising efforts. After a 20-year absence from the greater Philadelphia
area, Jessie is delighted to be working on the Main Line and living in Center City. A frequent visitor to
City of Brotherly Love before her relocation here, she enjoys talking about and eating (but not cooking) food; seriously consum-
ing and analyzing pop culture; visiting friends across the US; and competitive reading.