the illuminator

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Volume 26, Number 1 | Spring, 2015 ILLUMINATOR THE HIGHLIGHTS OF WHAT’S INSIDE 3 Spotlight on Awareness 4 Dr. Sandra Hofmann Research Update 6 New Board Members 10 News from our Supporters 12 Fundraising Q & A 14 In Loving Memory OUR STAFF Margie Frazier, PhD Executive Director 800/448-4570, ext. 11 [email protected] Becky Hetteberg, MA/LISW Director of Family Support and Education 800/448-4570, ext. 12 [email protected] Tracy Kirby Director of Development 800/448-4570, ext. 13 [email protected] Noreen Murphy Project Coordinator 800/448-4570, ext. 14 [email protected] 1175 Dublin Road Columbus, Ohio 43215 800/448-4570 866/648-8718 (Fax Toll Free) facebook.com/bdsra twitter.com/bdsra www.bdsra.org BATTEN DISEASE ADVOCATES STORM DC DURING RARE DISEASE WEEK Over 200 passionate rare disease advocates joined forces in Washington D.C. to attend the Rare Disease Legislative Advocates legislative conference and lobby day. During the conference, advocates heard from panels of experts and congressional staff who provided key insights into effective advocacy and updates on the political landscape. Armed with that knowledge, advocates then visited their representatives in the House and Senate, sharing their personal stories and lobbying for legislation on behalf of the rare disease community, visiting over 200 offices. Above are Batten families who ‘took the Hill!’ You can be a rare advocate all year long: · Write to your representatives in Washington and tell them your personal story of Batten disease. · Tell them to support the 21st Century Cures initiatives and become a member of the Rare Disease Caucus. · Learn more about rare disease congressional initiatives with Rare Disease Legislative Advocates, www.rdla.org and National Organization for Rare Disorders, www.rarediseases.org. From left to right: Joe and Nancy Coyne, Dante Herrera, Tracy Kirby, Marlo Dean, Tracy VanHoutan and Cheri Whobrey

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Page 1: THE ILLUMINATOR

Volume 26, Number 1 | Spring, 2015

ILLUMINATORTHE

HigHligHts of WHat’s inside

3 spotlight on awareness 4 dr. sandra Hofmann Research Update 6 new Board Members 10 news from our supporters 12 fundraising Q & a 14 in loving Memory

oUR staff

Margie Frazier, PhD Executive Director800/448-4570, ext. [email protected]

Becky Hetteberg, MA/LISWDirector of Family Support and Education800/448-4570, ext. [email protected]

Tracy KirbyDirector of Development800/448-4570, ext. [email protected]

Noreen MurphyProject Coordinator800/448-4570, ext. [email protected]

1175 Dublin RoadColumbus, Ohio 43215800/448-4570 866/648-8718 (Fax Toll Free)

facebook.com/bdsra twitter.com/bdsrawww.bdsra.org

Batten disease adVoCates stoRM dC dURing RaRe disease WeeKOver 200 passionate rare disease advocates joined forces in Washington D.C. to attend the Rare Disease Legislative Advocates legislative conference and lobby day. During the conference, advocates heard from panels of experts and congressional staff who provided key insights into effective advocacy and updates on the politicallandscape. Armed with that knowledge, advocates then visited their representativesin the House and Senate, sharing their personal stories and lobbying for legislationon behalf of the rare disease community, visiting over 200 offices. Above are Batten families who ‘took the Hill!’

You can be a rare advocate all year long:

· Write to your representatives in Washington and tell them your personal story of Batten disease.

· Tell them to support the 21st Century Cures initiatives and become a member of the Rare Disease Caucus.

· Learn more about rare disease congressional initiatives with Rare Disease Legislative Advocates, www.rdla.org and National Organization for Rare Disorders, www.rarediseases.org.

From left to right: Joe and Nancy Coyne, Dante Herrera, Tracy Kirby, Marlo Dean, Tracy VanHoutan and Cheri Whobrey

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2 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

Hotel reservations are available for the 2015 Annual Family Conference. This year it will be at the Eaglewood Spa and Resort in Itasca IL, July 9-12.

We strongly suggest that if you are flying, that you land at O’Hare International Airport.

Please call the hotel directly to reserve your room, and if you will have a wheelchair let them know, we have made special arrangements with the hotel. Be sure to mention “Batten Disease” or “BDSRA” to get the discounted rate of $107 per night. Reservations must be made by June 15th.

The phone number is 877-285-6150, and their website is www.eaglewoodresort.com

Conference registration will be available until June 15th, and is available at: bdsra.org/product/2015-conference

As always, please contact us if you have any questions,  [email protected] or 614-973-6013.

For families seeking financial support to attend conference, one source for potential support is contacting the local Developmental Disability Council. There are Developmental Disability (DD) Planning Councils that serve each state and territory in the U.S. and under the umbrella of “Family Support Services” financial help may be available.

To see if family support funds might be available in local regions through the DD council, visit: www.nacdd.org/councils.html

Join Us in CHiCagoJoin Us in CHiCagoJoin Us in CHiCago

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Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 3

Join Us in CHiCagoJoin Us in CHiCagoJoin Us in CHiCago

noaH CoUgHlan RUns foR RaRe in His tHiRd toUR aCRoss aMeRiCaNoah Coughlan began his cross-country run on Rare Disease Day, February 28th, at the Statue of Liberty. During his trek south, through Virginia, he made a special stop in Virginia Beach to bring awareness of rare diseases and visit some very special kids.

“Well, you’re looking at the reasons why I’m running!” Noah says. Noah is surrounded by Zeq Caalim, Dante Herrera, and little Savannah Geiger.  All of these kids from Hampton Roads are battling rare diseases.

“I will always take a day off or do a special tribute to the children who are fighting a daily fight.”

Noah will finish his run in July in San Diego, California.

spotligHt on aWaReness

pageant sHines a spotligHt on speCial needsThis February René Martinez and the Prosser, WA community came together to host their very own pageant for middle school and high school girls with special needs. The Washington Shining Star Pageant was a huge success with 16 incredible contestants, including René’s daughter Sophia. Over 300 guests cheered contestants as they dressed in evening wear and answered questions from the judges.

On July 24-28, Sophia, 2015 Miss Amazing Washington, Jr Teen, will attend the 2015 Miss Amazing pageant in Los Angeles.

Congratulations, Sophia!

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4 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

Dr. Sandra Hofmann continues important work with preclinical study

Preclinical studies often involve testing a treatment for a disease in an animal model. The Hofmann lab has been working for a number of years on treatments for infantile Batten using a genetically engineered mouse model . The mice become ill around 5 months of age and survive about 8 months (whereas the normal lifespan of a mouse is about 2-3 years). The mouse model has been useful for testing therapies for Batten disease caused by lack of PPT. Infantile Batten disease is caused by build-up of material in the brain due to lack of an enzyme called palmitoyl-protein thioesterase, or PPT. The normal function of PPT is to break a chemical bond between naturally-occurring linkages between

fatty acids and amino acids in proteins (the amino acid cysteine, in particular).

The enzyme normally functions in the lysosomal compartment of the cell where degradation and recycling of cellular material normally occurs. Lack of the enzyme PPT is harmful to neurons and causes the serious manifestations of infantile Batten disease. Some

Dr. Jui-Yun (Laura) Lu, Instructor in Internal Medicine, and Dr. Sandra Hofmann, Professor in Internal Medicine within the Division of Hematology-Oncology at the University of Texas Southwestern Medical Center

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Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 5

older children with Batten Disease (CLN1-late infantile and CLN1-juvenile) also have PPT deficiency with a later onset due to mutations that provide a small amount (2-4%) of normal enzyme function. If PPT could be supplied back to the brain, it is possible that the loss of neurons could be stopped, but probably not reversed.

The project funded by the Batten Disease Family Association in the UK, through the BDSRA sought to determine the effect of administering PPT directly to the central nervous system of PPT deficient mice by injection into the cerebrospinal fluid, as in a spinal tap. About 80 mice were used for the experiment. Mice received no injections, injection of a solution of artificial cerebrospinal fluid, or the same fluid with three different dose levels of PPT. For technical reasons only one set of injections was performed, at around 6 weeks of age, which is early adulthood for a mouse. Injected mice were subjected to motor tests throughout the lifespan. Data gathered so far indicate that injected mice live longer, perform better on motor tests and have improvements in brain and pinal cord pathology.

A clinical trial for children with CLN2 Batten Disease uses the enzyme TPP-1 (BMN-190) administered to the cerebrospinal fluid of the brain. The clinical trial was based largely upon preclinical mouse studies involving the CLN2 enzyme, much like the current study of CLN1.

Results of the current study funded by the BDFA/BDSRA on CLN1/PPT support using the same approach for CLN1 disease. Future experiments to prove the safety of the PPT1 enzyme in at least two species (a requirement for regulatory agencies) and more detailed efficacy studies for the final therapeutic product will also need to be done. Because the final therapeutic given to patients will need to be tested in a variety of ways to ensure safety and effectiveness, these studies are best done in the context of a pharmaceutical company drug development program. The results of the study will make infantile Batten disease/CLN1 an attractive opportunity for drug development. research related to all forms of Batten disease.

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6 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

BdsRa WelCoMes neW BoaRd MeMBeRs

Board elections for BDSRA were held in November, 2014 in which five candidates were on the ballot for four open positions. Official results were tabulated by the accounting firm of Laubie, Karling & Associates. Board nomination ballots were mailed to all current dues paying members of BDSRA.

Elected for a three year term was returning board member Mike Collins, joining new members Bob Jensen of Deer Park, Illinois, Darlene Royalty of Ursa, Illinois, and Donna Fogle of St. Augustine, Florida.

At the summer meeting the board amended the bylaws to appoint up to two members to the board for a two year term to fit critical roles. The board always has a need for a lawyer to review contracts and advise in legal matters. To fill this critical position the board has appointed Kate Haller for a two year term.

Mike Collins works for Numotion as an Assistive Technology Professional (ATP) and Certified Rehabilitation Technology Supplier (CRTS) in Mokena Illinois. Mike has been a member of the board for the last three years and brings his industry knowledge and experience to the board in order to facilitate an exchange of information between Batten families and industry professionals in the challenges we face with Batten Disease. Mike is dedicated to understanding what families are looking for from the board.

donna fogle is a Licensed Health & Life Insurance Agent/Advocate/Consultant/Lobbyist/Account Executive with The Bailey Group in St. Augustine, Florida. Donna brings to the board extensive experience in advocacy, legislation, fundraising and navigating the healthcare system. Her experience comes from time spent as a medical biller, her current position as an insurance agent and as a medical consumer for a child with special needs. Donna also brings the passionate drive of a mom on a mission.

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Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 7

Have you liked us on Facebook?

Followed us on Twitter?

Find us and join the BDSRA

conversation online!

facebook.com/bdsra

twitter.com/bdsra

www.bdsra.org

Kate Haller has been the Chief Legal Counsel at the Ohio Department of Developmental Disabilities in Columbus, Ohio since 2007. Some of Kate’s previous work experience includes The Ohio State University, the Ohio Department of Mental Health, and the Disciplinary Counsel of the Ohio Supreme. Kate’s legal experience in both health care and services for people with disabilities will bring to BDSRA invaluable insights into the legal world. Kate has also served on other nonprofit boards and will use her experiences to contribute to the success of the BDSRA board in any way she can.

Bob Jensen is a Partner and Director of Private Equity Services at McGladrey, LLP in Deer Park, Illinois. As a grandfather of a child affected by LINCL Bob is passionate about BDSRA and its mission. His personal experience with the disease will help identify the issues facing Batten families and how the board can best help them. Bob brings to the board experience in fundraising with several nonprofit organizations. With this experience Bob plans to focus on alternative funding and economic support. Bob also has an interest in increasing corporate involvement to put Batten disease at the forefront and raise awareness.

darlene Royalty is currently the Office Manager for Frericks Gardens, Inc in Ursa Illinois. As a mother of three children with Batten Disease, Darlene brings a unique and passionate perspective to the board. Her experience as a Batten mother gives her the knowledge to help families through their own journeys. Darlene believes strongly in “Taking Care of the Caretaker” and is dedicated to building up chapter support and working to increase membership.

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8 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

staff news

Who’s Who: Recent updates at the home office of BdsRa.

Margie frazierExecutive Director Margie holds a BSW from Ohio State University, MSW from the University of Kentucky and Ph.D. from the University of Chicago in Social Work. While helping the board and staff achieve BDSRA’s vision of supporting families and funding research, she represents BDSRA around the world as a global partner in improving educational, medical and social opportunities for those with Batten disease. This year, she’s looking forward to new signs of hope in current clinical trials, working on the quality of life programs with a Batten European Union-funded initiative and greeting Australian families as they celebrate 20 years of BDSRA-AU.

Becky Hetteberg, MsW, Ma, lisW-sDirector of Family Support and EducationBecky Hetteberg is a licensed social worker and holds dual Masters degrees in Social Work and Public Administration, and a Bachelor of Science in Social Welfare, all from The Ohio State University.

As the Family Support Officer for BDSRA, she connects families with community resources that can help them manage their affected loved one’s special needs. Her role centers on providing information, support and education to Batten families throughout the country. Becky is excited to explore new avenues for family education, such as Facebook chats and a web site blog so that we can reach families in meaningful and relevant ways.

BdsRa is all aBoUt faMilies ConneCting

WitH eaCH otHeR

Help us update the BDSRA family directory. If you would like to be

included, please send your name, address, contact

information and affected person’s name and NCL type

to [email protected].

This information is for the directory only. BDSRA does

not sell or share the directory with outside companies

or organizations.

tracy KirbyDirector of DevelopmentTracy graduated from The Ohio State University with a BA in sociology and is currently working on a BS in Forensic Accounting from Franklin University. In her previous role as Administrative Manager Tracy maintained the monthly financials, organized the donor communications and helped with conference planning and execution. In her new role as Director of Development she is looking forward to implementing a fundraising plan and continuing to work closely with the families.

noreen Murphy Project Coordinator Noreen has her BA in Leadership and Management from Capital University in Columbus, OH and her MA in International Administration with a focus on Non-profit Management from the Josef Korbel School Of International Studies at the University Of Denver. While in school Noreen’s research concentrated on fundraising and organizational management techniques with the goal of working in non-profit management after graduation. In Noreen’s current role as Project Coordinator she has the privilege of working on many different projects including database management, donation processing, and the general day-to-day operations of the office. This year she looks forward to continuing to learn the ins and outs of BDSRA and to get the new database up and running smoothly.

From left to right: Becky, Tracy, Margie and Noreen

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batten awareness weekendjune 6th - june 7th, 2015batten awareness weekendjune 6th - june 7th, 2015

join us as we connect through hopeVisit www.bdsra.org for more information on how you can connect with your community and spread the word about Batten Awareness.

join us as we connect through hopeVisit www.bdsra.org for more information on how you can connect with your community and spread the word about Batten Awareness.

educate ★ understand ★ advocate ★ hopeeducate ★ understand ★ advocate ★ hope

Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 9

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10 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

the BdsRa BooKsHelf

Children’s Book selection

“Where Are You? A Child’s Book About Loss” by Laura Olivieri

This selection is for children ages 4-8 and is a useful tool to help them honor the memories of loved ones who have passed and showing kids that this love remains with them in the present.

adult Book selection

“The Special Needs Parent Handbook: Critical Strategies and Practical Advice to Help You Survive and Thrive” by Jonathan Singer

The Special Needs Parent Handbook provides practical advice for any parent of a child with special needs, for caregivers of children with mild learning disorders to those with severe cases of autism, cerebral palsy or other disabilities.

Learn more about: • Hiring babysitters and free respite help • Finding the best and kindest doctors • Keeping the family together • Taking care of your health • Strategies for inclusion and recreation• Being a strong advocate for your child • Planning for the future

neWs fRoM oUR sUppoRteRs

tyleR sittig inspiRed By His fRiend oliViaChildren with Batten disease inspire greatness.  Tyler Sittig, of Baker, LA, turned his experience getting to know Olivia Lewis from Baton Rouge into a fundraiser for BDSRA.  He is a pre-nursing student in high school and decided that rare diseases and Batten in particular would be his focus for his senior project.  Along with

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Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 11

a paper he had to write and a portfolio presentation, he sold enough t-shirts to donate over $1,200 to BDSRA.  Thank you Tyler and good luck in nursing school!

entRepRenUeR Raises Money WitH MaKeUp Makeup Geek founder and CEO Marlena Stell hosted an entrepreneurial seminar, “10 Steps to Starting Your Dream Business” on November 16th, 2014. This seminar took participants through 10-steps to use to launch and grow a successful business. Over $40,000 from this incredible event was donated to BDSRA. Makeup Geek also donates 100% of the profits from their Caitlin Rose Eyeshadow to support research and the families affected by Batten Disease. Marlena is a close family friend of the Allio’s and considers Caitlin and her family to be a part of her own. Caitlin Rose Eyeshadow can be purchased at http://bit.ly/1FGUetU.

Candle sale geneRates aWaReness This October was the 12th National BDSRA Fall Candle Sale. The candles for this sale are made in Monroe, MI, the hometown of the Thompson family, and sold all over the country.  This sale is not only a great fundraiser but also a fantastic awareness builder. Sara Thompson said “We not only raised $300, but people loved the candles and more importantly, they love supporting BDSRA.”

Batten gaRage sale taKes oVeR staten islandThe Surrey family of Staten Island, New York, devoted two weekends in September to fundraise for Batten disease. Over $6,000 was raised for research in six days of the selling of hundreds of items in their colossal sale. Items covered the front, side, and backyard, according to Janet Surrey, mom to Michele and Lauren, who have CLN3. Volunteers, friends, and family spent many hours in this effort. Well done!

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12 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

answers to your fundraising Questions Events and fundraisers are an important community partnership for BDSRA to help the research and family services mission of the organization. We appreciate all the gifts of time, talent and skill to help expand the resources available for research and family support. Our goal is to help each and every event be successful and seamless for organizers and volunteers.

Q: How does the national BDSRA office help with third-party event fundraisers? A: The national office can offer advice and resource guidance on event planning and the process for accepting donations as well as help promote the event with the BDSRA website and Facebook links. Educational and awareness materials are available and can be shipped to the event location, and the office will also provide permission and promotional guidelines for use of the BDSRA name and logo. Event ideas and referrals to event mentors who have experience with certain formats are also available. Pre-event publicity and post-event information and photos can also be shared and coordinated through the national office to let BDSRA families know what great work is being done on their behalf.

Q: What are the financial guidelines and what is the process to receipt event donations?

A: The BDSRA national office follows all financial and tax regulations required by the Internal Revenue Service (IRS) of 501(c)3 nonprofit organizations associated with third party fundraisers and events. Detailed accounting of event revenues and donor gifts is important for tax purposes. All donations received made payable to and received by the national BDSRA office will receive a written acknowledgement for tax purposes acknowledging the donation. All donor contact information, amount of gift, and date of the event is necessary for the national office to provide gift acknowledgement letters. This information can be emailed via a list or spreadsheet to tkirby@bdsra. org, or sent in the U.S. mail to BDSRA, 1175 Dublin Road, Columbus, Ohio 43215.

Under federal income tax law, if goods and services are received by a donor in return for a donation (raffle tickets, meals, gifts, golfing), the portion of the donation that is tax deductible for tax purposes is limited to the amount by which the donation exceeds the value of the goods or services received. If donations from an event are deposited into a separate account outside BDSRA and donated in a single amount to BDSRA (i.e., one check), only the individual, organization, foundation, or other entity whose name appears on

the check is eligible to receive a tax acknowledgement for the donation. It is the responsibility of the event sponsor, when appropriate; to inform donors their gift cannot be acknowledged as a tax deduction to BDSRA. Credit card gifts charged to an independent bank account outside BDSRA also cannot be provided with a tax deduction from the national office. Cash gifts must be entered on a list with the donor’s name, amount of cash donated, and contact information when transferred to the national BDSRA office. Proceeds from an event listing BDSRA as the nonprofit gift recipient, with checks made payable to BDSRA, cannot be split between the organization and any other group or individual if BDSRA is providing a tax acknowledgement to the donor. BDSRA cannot provide a Tax I.D. number or nonprofit 501(c)3 status to any event that is a fundraiser for private individuals or families.

Additional details and IRS requirement guidelines to acknowledge charitable donations are available at www.irs. gov and Publication 526 of the Internal Revenue Service or by calling 800-829-3676.

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Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 13

Q: What are the guidelines for event expenses and banking?

A: Event organizers are responsible for expenses associated with third-party events, and the national office cannot process any bills or invoices associated with third-party fundraisers. Any insurance liability coverage, and federal, state, or local taxes associated with an event is the responsibility of the event organizers. The national BDSRA office cannot compensate for an event in which the expenses exceed the proceeds.

Q: Will thank you letters be sent from the national BDSRA office to event participants?

A: The national BDSRA office will send a thank you letter to event participants if the office is provided with a list or spreadsheet with the names and contact information of the participants. This can be emailed or mailed to the office. A gift acknowledgement letter with the appropriate charitable deduction documentation will be sent to event donors whose gifts are documented and transferred to BDSRA within the IRS requirements noted above. The national BDSRA office will work with each event or fundraiser in advance to determine what letter can be issued to donors by BDSRA within the tax and organizational guidelines. Thanking event participants and donors is an important step in helping supporters feel their gifts are important and have an impact. It also encourages people to attend again and share their experiences with others.

Q: What if there are special situations or questions about an event or fundraiser?

A: Call BDSRA at (800) 448-4570 or email [email protected].

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14 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

MARA ELISE NICK, daughter of Robert and Alice Nick, Leander TX

Born: 10-9-91 | Died: 12-28-14 Juvenile

ASHER NIKOLAJEVS, son of Victor Nikolajevs, Berlin Heights OH and

Leisa Oakes, Milan OHBorn: 3-11-97 | Died: 12-20-14

Infantile

BRYLEE GRACE HOLMES, daughter of Joseph and Stacey Holmes,

Decaturville TNBorn: 3-6-09 | Died: 12-16-14

Late Infantile

ADDISON KURTZ, daughter of David and Cathleen Kurtz, Glenview IL

Born: 8-8-06 | Died: 11-15-14 Infantile

HAYDEN ELIZABETH THELAN, daughter of Eric and Christine Thelan,

Two Rivers WIBorn: 1-4-06 | Died: 11-9-14

Infantile

AUDREANNA ESTEEL ALBAUGH, daughter of Joseph and Melissa

Albaugh, Toms River NJBorn: 4-4-95 | Died: 10-19-14

Juvenile

in loving memory

KESLEY SHUROS, daughter of Warren and Lois Shuros, Eagen MN

Born: 3-22-86 | Died: 10-17-14 Infantile

LEILA ANDERSYN MIMLITSCH, daughter of Jerry Mimlitsch Jr. and Brittany Butcher, Elizabeth City NC

Born: 8-13-07 | Died: 10-12-14 Late Infantile

DREW FERRANDINO, son of Tony and Katie Ferrandino, Newton PA

Born: 2-1-02 | Died: 9-30-14 Late Infantile

GRACIE ELLA STANCOMBE, daughter of Michael and Maria

Stancombe, Merrimack NHBorn: 4-27-05 | Died: 9-24-14

Late Infantile

SOPHIA GRACE CRAWFORD, daughter of Jacob and Jamie Crawford,

Lexington KYBorn: 11-17-11 | Died: 9-17-14

Unknown

ALI BRIONNE VISE, daughter of Scott and Donya Vise, Hot Springs AR

Born: 7-9-07 | Died: 9-16-14 Infantile

WILLIAM HUDSON MIMLITSCH, son of Jerry Mimlitsch Jr. and

Brittany Butcher, Elizabeth City NCBorn: 12-19-04 | Died: 8-28-14

Late Infantile

AARON LESHKO, son of Robert and Mary Beth Leshko,

McAdoo PABorn: 1996 | Died: 8-18-14

Juvenile

BDSRA takes great care to memorialize those individuals who have passed away

from Batten disease. If a person is omitted from this page, it is because BDSRA was not notified of the death, did not have permission to publish, or did not have

confirmed information.

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foURtH QUaRteR donoR gifts(Gifts given September 1, 2014 through December 31, 2014)

The Batten Disease Support and Research Association has been remembered many times in the past four months by families and friends affected by Batten disease. Thank you for your generous contributions. This support for the vital mission of research and services for families is crucial to finding a cure. We are also grateful to those supporters who have participated in events and volunteered their time to advance our efforts for Batten disease research and family services. We also acknowledge in this donor list all the generous contributions made through the 2014 Annual Fund Campaign.

IN HONOR OF:ALL CHILDREN JoAnn Morissette

ANNIE ALLIO Joseph and Kathleen AllioBenjamin and Colleen CaddockRA and MM EastonCindy FarmerMakeup Geek LLCJanet Schroder

THOMAS ANDERSONKurt and Joyce Moser

MARILEE BALLStephen and Bonnie Thompson

DOLLY BERNSStephen and Bonnie Thompson

KATE BENROTHEllie Benroth-In Honor of Her BirthdaySandra BenrothGordon and M Jane DonnellyBritt Menchhofer

SOPHIA BIGELOWHeidi BigelowRebecca O’Dell

LOGAN BOONERhonda McDowell-Miller

WILLIAM BRADDOCKWilliam and Gwen Cotton

DANIELLE and HOLLY CARBREYMichael and Jo Diane CarbreyKaren Fitch Jerome and Shaaron GajdosikRay Elder and Amelia GonstalJohn and Antoinette SchreckJane Wendling

THE CARBREY FAMILYTCG Consulting LLC

NAOMI CAUGHEYKimberly CannonRob and Ann Caughey

BECCA COLLINSThomas and Patricia CroninThomas and Mary-Jo MackJames and Roberta ReadyMaureen ReadyPaul and Carol Rezmer

EMILY COLLINSTommy and Patsy Davis

GARRETT COYNEGarrett the Grand – Batten FighterDenise HartJim and Laura LinkLori LongJune MizrahiThomas and Joan NawrockiKevin and Theresa ReidKristen Voltz

ZACHARY CRAMERGarry and Pamela CramerMichelle Peiffer

CLIFFORD DAHLBrian and Karen AndersonAdriana ColindresMr. and Mrs. David DahlDennis and Carolyn Dahl Randy and Ellen Dahl Susan Dahl Friends of the Chatham Library CaféDarin and Kristen LahoodAmy NelsonDiane ParkerChuck and Diane Richert ParkerMr. and Mrs. Eddie RodriguezJennifer Wernsing

THE DOCKTER FAMILYGabriel and Angelina Sparandera

KENNETH DOCKTERAntonio and Ellen D’EspositoAnthony and Virginia DiMaggioGene and Edie DockterStephen and Francine Kettyle

SAM ENGMANNathan and Sarah Engman Memorial Lutheran Preschool Smith

RYAN FARETElna FaretEric and Lisa FaretRobert and Mary HasbrouckRodney Schabel and Gunhild HendricksonEdward and Veronica SnyderJames ThomasDenise WrightHelen Wernlund

PARKER FARREROJoan Johnson

LEAH FITZGERALDRichard and Clare MeyerKaryn Meyer-BerthelDonna FitzgeraldMarilyn Gulotta

KELLEY FORSTERJeremy and Elizabeth Forster

MARGIE FRAZIERArturo and Kara Abarca

MARGIE FRAZIER and DAVE LIPPERTSteve and Ann Keller

NICHOLAS FREEMANLucille Allegretti

KELSEY FULLERDouglas and Pam Fuller

ETHAN GAHLBECKGale Vance

MACEY GARRISONJen Seferyn

JACOB GEERSophia GeerSteven and Kathleen Northrup

LEAH and CARSON HAMMJoey and Kristy Hamm

KELSEY HARDINBruce and Diane ArkleyGeoff SchillerBryan and Jacqueline Williams

FRANK and BRIDGETTE HARRISONEzzie and Mary Frances HarrisonDan and Julie Heath

THE HAWKINS FAMILYMartha BerkebileGarett and Christine Lederer

JEREMY and BRANDON HAWKINSMargine BensonSteven and Tricia FoxChris and Wendy Hawkins

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NICHOLAS HEUCHANJohn and Tina Heuchan

JENNA HILLJanet DentiJoAnn and Brian Hill

BRYLEE GRACE HOLMESMake-A-Wish Foundation of the Mid-South

NATHAN HOOVERRon and Barbara Essinger

JESSICA HYNIELarry and Jacquelyn ReichardtMartha SkellyKathryn and Kathy Twisselmann

NOAH JOHNSON Anonymous Audio 31 MusicEugene and Christine CloutierDennis and Sharon DepoiJeffery and Traci DudanGregory and Jamie FergusonHoward and Myra FlickJC and Susanne JonesJanes and Sandi LewisStephen and Jennifer PeckRobert and Wendi PopoffMichael ProssTim and Maria RamseyHans Christian RehartMichael and Tara ReevesMichael and Meg SileoVeronica Vagnone

LANCE JOHNSTONAnonymous

HINA KAMALNohad Hanna

BRIDGET KENNICOTTRobert and Karen JensenJanice Jensen

ERIC and MCKENNA LOWDENTony and Jayme BlalockKeith Lowden I. W. and Margaret StephensonLila Thome

TAYLOR KINGMom and DadLottie Sutton

BRIAN KOTTMEIERJeff Krier

MABEL LARSONKaycie Clayton

THE LOWDEN FAMILYGL and Ann Harris

MR. and MRS. MARTIN LUMMAnnabelle Kepler

JOHN MANGUMMike and JudyLynn Mangum

WESTLEY MCKINLEYThomas and Cecily BowFrank and Jo Webster

TALAL and SANA MEHMOODSyyed Mehmood and Sajida Kamran

MILANI FAMILYJeff Van Spankeren

JEFF MONTAVONGofore Hole, LLCCourtney JonssonRobert and Donnalee KlattRebecca LamkinAngela McConnellCharles and Tini MontavonPhalen Steel Construction CompanyLori VermelandDanny and Kathryn Windland

DOUG and JOAN MORISSETTEBrian Hill

MATTHEW O’LEARYJames BreenRichard and Carol GeerDonna KingSarah Kipp

KATELYN PAULINGChippewa County – Montevideo HospitalAllen and Melissa AndersonDavid and Rebecca ArndtTommie and Darlene BoikeEdward and Pamela DelfDavid and Adriane HarperTina KlosterboerErik and Vicky MoeNatasha NeumannKelly QuigleyMark and Wendy PetersKenneth and Sharon RuppPeggy SchumacherBeverly Winters

THE PFOHLSElizabeth McBroom

JOEY RANKINAshley Heisler

CHRISTINE RATZPhilip and Ann HovisKate OshimaSheri Ratz

BRADY REGEHRAnonymousElise BirdEncana Oil and Gas, IncRandi FentonBecca LoppacherJim and Yvonne Schlosser

ASHLYNN RHODESShawna Rhodes

RICKY RICKETTSMathew and Hilary Cooley

MASON SMERDELBernadette DemouraEdward and Katey KowalskiMarianne TerryThomas and Judith Uline

KRISTIN SMITHThomas and Diane Fogle David and Kathy HultgrenPorter County Community Foundation, IncJames and Linda SmithRichard and Janice SteinbeckMarianne Terry

MICHELLE and LAUREN SURREYMarion Rissman

ADAM TAYLORRandy and Lori ParsonsMaryon Williams

BONNIE JO THOMPSONDouglas and Martha Thompson

RICK and NADINE THOMASChristine Thomas

REX TIMKODoug CratesTaryn JosephicMary Ann Snyder

LAINE VANHOUTANBrandy Staker

NOAH and LAINE VANHOUTANMadilyn AbernathyJeff and Theresa Arnold

LUKE and RACHEL WATSONWilliam and Jackie Richards

NICHOLAS WELLNERAmie Broesder

IN MEMORY OF:AUDREANNA ALBAUGHRichard and Audrey AlbaughLarry and Veronica AsayDarin and Kristen AshbaughAudean BleutgeChristine GutowskiAlain and Janie IsnardFloyd and Melodie Smith CATIE ALLIOJoseph and Kathleen AllioBenjamin and Colleen CaddockRA and MM EastonCindy FarmerMakeup Geek LLCJanet Schroder

16 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

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REY ALSEMGEESTAnonymousStephen and Mary BalanowskiChristina De VincenzoCarmen DevincensoHarry and Anne GiesenThau V LangLibro Credit UnionMiranda MattucciJohn and Mary MichielsNor’West Venom Soccer TeamVince and Mary QuinnAndrew and Kathryn RivettYvonne RudgenJohn and Janet RuypersTracy and Jennifer VanHoutan Stephen and Wendy VensBert and Annie VerhallenMary Ann Verosted

DEON AMOSAHBrenda Bender

TYLER AMOSAHBrenda Bender

KARI ANDERSONGregory Nelson

LAURA ANLAUFGeorge Renier

CURTIS ANTHONYCurtis Anthony’s Hope

JEFFERY BALZERJeannie McCormick

CELIA BETZTim and Jan BetzSally BetzKathryn BurrisDaniel Chernick and Sarah ZellerSandy FergusonMarilyn HalsteadChelahnnhe LyonsJohnnie and Bonny MarcumKimberly PattersonMichael and Elaine RankinGary and Karen RawsonJoan E SchmidtLisa A Y SchmidtPhillip and Carlene StarcherCory and Bridget VaudtMike and Mary Wendel

MARK BINDLBill and Dorthy Bindl

KIMBERLY and COREY BINGHAMMargaret Bingham

LYNN and LESLEY BLAKEJames and Maryalice BlakeSusan Gaveline

JEFFERY MICHAEL BOBBYMichael and Carol Bobby

AMY and MICHAEL BOERJohn and Brenda Boer

ABBY BORTZDaniel and Karen O’Conner

EMILY BORTZRyan Bornbach

MARY ALICE and ABBY BORTZBarbar Dodd

AIRON BOLEYBrandy and Don Boley

DANIEL BREUERDad

HUDSON BUTCHERTracy and Jennifer VanHoutan

ZICHAELA CAFFEYTracy and Jennifer VanHoutan

CASEN CAMERONAdam and Kaela BaumbachAbigail RiveraTracy PurcellJeffery and Jennie Schultz

MICHELLE CARLSON Mark and Kathleen CarlsonMichael Flynn

TREVOR CASTLEBetty Jo Eaton

HANNAH CAULFIELDAmy CaulfieldDad and Lori

CARMEN CEOBarry S JonesJeffery Reynolds

ALLY CHANCECharles and Rose ChanceJody and Kim Chance

ANN CHOROMANSKI Ray Edler and Amelia GonstalMarcella KliethermesWalter Schaeffer

CARLA CHOWJohn and Geraldine Bixler

GRETCHEN CLENNONMike and Donna Dodge

DYLAN CLASPILLValerie Mobley

RYAN COOPERRobert and Glenda Cooper (Corky)

SOPHIA CRAWFORD and ALI VISEAnonymousKelly Kottmeier

SOPHIA GRACE CRAWFORDAnonymousAMR Management ServicesSheila BentleyJennifer Cranfield-McDanielEd Phillips, IncMarie FerraraFirstGivingJessica HawesAlexandria HernandezRoberta JonesKristine KellyTricia LangleyRalph MarchChristy MorrisAmanda NoelReid and Elizabeth PolomeBrandee Prosser-DotsonEsther RodriguezJohn Ruffin Julie Walczak-SchneiderKate Ware

JOHN CROYStephen and Bonnie Thompson

CLAY CUNNINGHAMCommunity Foundation of Louisville Depository, IncDave, Jane, Fowler, Claire, and Cauley Cunningham

AL DAVISCandice DodrillJeff FrodgeBetty Ruth FryJudy MasonMichael Silver & CoKathy McElligottLarry OmoGerald PeircePTS-IT SouthwickJames and Linda SmithLarry Tumbleson

CASEY DAVISPaul and Julie Bell

CAROL DARNTONStephen and Bonnie Thompson

MEGAN DEPEWGreg and Diane Stacey

KANE DEGEORGISLinda CrainDoris DavisMartha Massey

CATE DIBBLEChristopher BrauneisRA and MM Easton

CHRISTOPHER PAUL DICAPUAFred and Peggy DiCapua

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LAURIE and TOMMY DOCKTER Gene and Edie Dockter

EMILY DUGGERDanny and Sara DuggerJames and Kathryn Kerlick Gerald and Nancy RaglandRichard and Teresa RoseSteven and Amy SummersWoodruff Supply Company Employees

PETER EDWARDSAnthony and Donna Barkowski

RICK and STEVE ELLERBROCKDennis and Nancy Rosengarten

TRAVIS FAIRBob and Marie AmassRob and Linda CraigRonnie and Nancy Lee

T FARET and IN HONOR OF B FARETDennis Olsen

DREW FERRANDINODrew’s Hope Gary and Janice Schenck

JEREMY FIELDSCecelia Fields

AMANDA FITZGERALDDonna FitzgeraldMarilyn GulottaValerie A Johnson

KATE ELIZABETH FRANKPaul and Linda Frank

CHRIS GAINESAlabama Chapter BDSRA

SARA GEDEONTomas Gedeon

JR GODFREYRichard and Katherine Godfrey

KERRICK and CHRISMOND GOLLBeverly Goll

CONNIE SUE GRANDLEKim and Margaret MudgettZane Grey Ole Auto Club

GREGORY GREENShawna BaasCary and Carol ColglazierJoe and Donna GerringerMelissa MaxieKaleb and Lindsey McKinneySue MellencampJerry and Fran MolkerKevin and Tammy Riorden Charles VanceRodney and Margie WillmanDwight and Robin Wischmeier

LOGAN and GREGORY GREENBevers Pharmacy

TRACY LYNN GUERTNERRonald and Barbara Ouellette

KOURTNEY DANIELLE HARMONThomas and Diane Fogle

TYLER and RYAN HAXTONTim and Marsha Bagby

STEPHEN HATCHETTSusie Wilee

AUSTIN HEINTodd and Patricia BaucomCheryl S DunhamRobert and Audrey FinkDoris GlatzHeart Of America Chapter BDSRAMartina and Helen KatzDonald and Catherine HollenbergMichael and Janine McGovernRobert and Esther NegwarLorine PelletierKen and Lexine PranschkePaulita PranschkeDavid and Linda SenterGary and Gail Voss

TY HICKS and MORGAN HICKS-HOPKINSDonna Crawford

DANNY HOUGHTBY and MICHELE SHERIDANSusan Bradley

CHROSTOPHER ISNARDMom and DadGilbert and Anne BaruchGregory and Jeanne Metzler

BOB JENKINSStephen and Bonnie Thompson

JAY JENSENMary Jensen

JAMIE JERCHAMark and Linda Jercha

JAMIE JERSHADonald and Margaret BlankBrian and Nancy ReeseAnthony and Loretta Tomich

COURTNEY JOHNSONAnonymous Audio 31 MusicRonald and Marcelina BrittonKenneth and Betty BrownJoseph and Phyllis BraunsbergEugene and Christine CloutierRodger DannerDennis and Sharon DepoiSteven and Colleen DowiatJeffery and Traci Dudan

Gregory and Jamie FergusonHoward and Myra FlickPeggy FosterPat HopkinsJC and Susanne JonesBenjamin and Rita KingJames and Sandi LewisDorothy LoudonStephen and Jennifer PeckRobert and Wendi PopoffMichael ProssTim and Maria RamseyMichael and Tara ReevesHans Christian RehartMichael and Meg SileoEldon and Patricia SteinerVeronica VagnoneGary and Katharyn WetzelJW and Dora Westfall

ELIZABETH JOHNSONJudith A HaynesKeith and Alice Johnson

LAURIE and DONALD JOHNSONArlyn and Mardell Johnson

LORENA JOHNSTONCarol Pryor

HAYLEY JOYCERobert and Mary Krause

BRET KILLENLarry and Jean Killen

JULIE KLEEMom and DadHoward and Susan Schub

LEVI KNOWLES John and Linda Niemi

DANIEL KOERNERSusan Steinberg

ADDIE KURTZKaren Shankman

MARY LAMARRATim GallgherDennis Gallagher

JUSTIN LAVENRobert and Jeanne HagenNeil and Leslie Nelson

JULIA ANN LEFFLERJoyce BaffiJim and Cheryl Brown James and Ellen CrawfordClarenece and Margaret DavisAnn FrazierLinda HallValta HartsternSteve and Elaine JonesJohn and Helen Key

18 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

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Charles and Wanda LefflerGeorge and Betty Anne LennonKevin and Michelle McKiernanAl and Kathy RankinLaura RatchfordBarbara Spencer John and Susan SuggsNoah and Amy ToomeyBob and Shirley UsryAndy and Jennifer Willis

NOLAN LEISHarry BealStanley and Carol ClementsRudy and Pat HerrewigJim and Jill Thompson

MATTHEW and RICK LOWTHERCurtis and Deborah Lowther

MATTHEW LOWTHERGeorge and Roberta Parnicza

KEVIN LUMMMartin and Vicki Lumm

RYAN MAYNARDChris and Margaret KuffenkanmJoel and Christine MaynardKody MaynardDennis and Denise Sacha

ROBBIE and STEPHANIE MAXIMMary Ann AsherMadeline Stone

JONATHAN MCCOLLUMCary and Brenda CobbDaniel and Janet EasonBarbara FlattCarl Gessner Bob and Par HatleyKendrick and Jean HurtDavid and Wanda McCollumLillian Moser and Teresa LambertHarry and Carolyn PikeDavid and Eleanor RobertsDavid and Faye RobinsonDwight and Irene SharpeJerry and Fran SherrillEugene and Joan SmithSoutheast Chapter BDSRAArthur and Jane Winstead

LEAH KATHRYN MCFARLANESandra Phillips and Kristen CoonTimothy and Kristin CoonLeisa Strabel

MATTHEW MCGEEBarbara KelleyKelly and Sarah Sapp

JAKE MEDLEYD and A BarryChristine Boyd

John FanninShelcon and Nancy FerdmanRory JenkinsJoujou, IncP Barry and M Lawlor-BarryGordon and Judith LittDean and Jennifer MedleyRandall and Renee Rhoden

JOEY and BILLY MILANIErika Clas and Susan MilaniVictor and Ellen MarshMargaret McCormickWilliam and Cynthia MilaniMay NewbyKenneth and Eleanore Van Spankeren

HUDSON and LEILA MIMLITSCHChiyona BourneBarry and Caroline EspositoTodd and Cori ParsonsAnthony and Suzanne Valenti

ASIT MUKHERJEEWITHSondra Levin

CHARLEE NELSONJeff and Catrina Nelson

KAREN NEWTONRobert and Joann Newton

MARA NICKWendy Gentry

ASHER NIKOLAJEVSAnonymousWalter and Valentina BachirSanford BlackEric Brown IncMaurice and Jamie FioccaRobert and Ida HastingsPaul and Carol HiszemThomas and Stephanie JohnsonAaron KrauseWilliam and Susan LuchtMarc and Susan MartterTony PagrabsJohn and Deborah PankowAndrew Schaffer

ZACHARY NOORDHOEKGreta NoordhoekJulie Carlson-NoordhoekTom and Julie Noordhoek

TIM NORDQUISTAmerican Family Insurance

LAURA NOWACKIPatricia Lucey Melissa MannLynne Thomas

EVELYN NOWICKISarah PelhamSusan Robles

NATHAN OLIENLorean HallTom and Marla NelsonK and D Turner

MEGHAN O’NEILJames and Aileen ReasonerRoy and Linda Palmer

DANNY ORTENGerald and Lynne Flynn

DANIEL ORTLANDJack and Joan KischJohn and Margaret NicolichDave and Joan OrtlandKirk and Anabela Rossi

PATRICK PAVLATStephen and Bonnie Thompson

BENJAMIN PAYNEKaren Payne

BARBARA PATTERSONSusan Converse

JUSTIN PECK Corey and Cheri Peck

DAVID PETTERSONAnn Caldwell

SARA PFALLERWilliam and Christine BataldenCasimer and Patricia DuravaGeralyn HamesBenedict and Luanne PfallerJean Walsh

DAVID PFOHLWarren and Brenda PfohlRichard and Jeann Rybinski

MARCY, MINDY and MICHAEL PINDERRandy AnselPauline Ramsey and Michele FeeneyWilliam and Pat Pugh

HOWARD PITTSFaye Reynolds

LAURA POHRENJohn and Karen Newell

STEFANI PUSKARJuhan and Inge Puskar

JAMES and MARK RICKMANCenta Corporation

RUTH VIOLET ROBERTSDan and Iris Van Caeyzeele

AMBER, SARAH, and SANDY ROYALTYMom and DadAndrew and Ruth BaerLynn SprakerMark and Joan Koenig

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CHARLIE SCANLONBill HaddadCharles and Anita ScanlonPaul White

SANDRA LU SCHATTLERLewis and Carol Schattler

COLLIN SCHMIDTKent and Karla Schmidt

KORRY and RACHAEL SHARPTimothy and Ginger DunneEugene and Keiko McCall

AMIEE and MONICA SHEERMANRichard and Linda Sheerman

MICHELE SHERIDANCasey and Faye Zaski

KESLEY SHUROSAllan and Miriam AhurosRobert BergsgaardDonald and Carol BlegenHoward Bornstein and Judy RussellCarol Mallgren BoleyKristin Bullock-HermanJennifer Li CaldwellTonya CarlsonStephan, Diana and Susan ChabotCraig and Sandra CooperCarol CortezFoth Co.Dean O GjereDr. D. C. I.Bill GoebelChris Gondeck Timothy and Debbie Grant Jessica GraveenMichael and LaVon HammesMatthew and Molly HayenHeyer Truck Line, IncJustin and Patricia HornungThomas and Carol HornungCraig and Cynthia HotvedtDaniel and Sondra HotvedtMark and Heidi HotvedtJanice HotvedtCurtis and Suzanne HudakRussell and Mary ImoehlKevin JohnsonDavid and Beth KloecknerCharles and Teresa LahamTom MadiganNancy Mangum David and Julie MayneNancy McLainReo MenningRobert and Debra MillaJames and Becky Miles-PolkaRobert and Patricia MohrbacherKatherine Morris

Nicole NicholsonSteve and Roni OmanAnthony and Kristie OriferKathy OsbornePrime Lands, IncResource Recovery Technologies LLCKirk RosenbergerJanet SannessBernard SchmitzNorman Schiferl and Deborah WoodworthMarian SheildsCharles and Judy ShurosLori ShurosWarren and Lois ShurosJoni Spaulding Laura St. Mary Stephen and Bonnie ThompsonTheodore and Martha TroolinMichel and Ann TubbsDon VogtGina WilmingJames and Jill WellnerDavid and Mary WittrySteven and Janet Yngsdal

NATEY SCHWARTZEFrancis and Teresa Schwartze

LINDA SIVULKAMark and Bridget Podskarbi

EMILY and SHELLY SMITH Robert and Cynthis Brannan

JACKSON SMITHERSRobert and Alice Smithers

ERIKA SPAIDEMiguel and Nancy PeruyeroKim Spaide

GRACIE STANCOMBEDon and Kathryn LevesqueParents and Teachers of Thorntons FerryAngelina PerronJames and Judith TheokasTracy and Jennifer VanHoutan

MATTHEW STEWARTStewart Fine Art

BROXTON TAYLORDanielle ChavezDesert Gator Pools & Custom ConcreteFrank and Ann GennarioJMAC Heating and Coolings IncNextcare, IncPinnacle Wealth Advisors, IncTwo Guys Barber ShopAlbert and Laurie Vallarian

EMILY THOMPSONBonnie Jo ThompsonSara ThompsonStephen and Bonnie Thompson

David and Jessica ThompsonWinifred Webb

GRANT and RICK TISZAIRJ and Deb Phillips

BRADLEY TYLERJudith C and Robert Tyler

ALI VISECharlene HarwellTracy and Jennifer VanHoutan

EZEKYIEL VONDERHEIDETracy and Jennifer VanHoutan

TYSON and TIMOTHY WEAVERSteve and Stephanie Hanson

MICHAEL WHEELERPride International, Inc.

CAROLYN WILHELMR Dennis KellyThomas and Mary ShanksRobert and Laura Wilhelm

DANNY WINDLAND Danny and Kathryn Windland

LINDSAY and CASSIE WOLTERChuck and Mary Ditter

CHELSEY WORSTERRachel HunterNina Morrison

MADDIE ZELLMERAmelia MannWilliam and Patricia ShellTodd and Kimberly Zellmer

DAVID YAMAUCHIPauline Yamauchi

DANIEL YANAKLes and Debbie Ham

PROGRAMS, SERVICES & RESEARCH:Advanced Cargo CorporationAmira Al-UzriAmerican Endowment FoundationAnonymousAT&T/United Way Employee Giving Program Denise BabcockBradford and Alison BarryBDSRA Alabama Chapter BDSRA Canada ChapterBernard and Janet BehrenshausenJoshua and Lindsey BillsWendy BillsJames and Maryalice BlakeMichael and Carol BobbyCarl and Audrey BrooksBobbye Bryson

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Joseph and Rita BurnsLori A BuserEverett D ButtsConstance CappCFC of Chattanooga AreaCFC of DelawareCFC United Way of Central OhioNYC CFC Peninsula CFCSouthern Arizona CFCEastern Pennsylvania and Southern NJ CFCFederated Campaign Stewards, Ohio River Valley CFCCombined Federal Campaign Eastern WisconsinCohoes City School DistrictVincent and Lorraine ColarussoSteven and Bonnie CorsNancy CoyneJeff CwynarDennis and Carolyn DahlDavid Mitzel ConstructionMorgan CunninghamTony and Kristen DepoiMark and Pamela DimariaDr. School FoundationBrett EngstromGail FalkThomas and Gail FennimoreCharlotte FeldmanDonna FogleMelton and Marilyn FrederickFriends of the Chatham Library CaféGE United Way CampaignMay A GebhardtThe Giving Campaign AllstateGive with Liberty, Liberty Mutual Foundation MatchThomas and Helen GleasonGlobal Impact Bernard and Selma GoodmanGoodshopSharon GrabilRichard and Ann GundermanMarvin and Dorace HardingRandal and Sherry HatchettDebba HaupertTim and Ruth HawkinsMark HoaglinGeorge and Marylou HoltHospira Employee Giving CampaignEarl and Jan InksRobert and Karen JensenMary A JensenJoy PageDaniell and Anne KappThomas KeenanDavid and Sara KennicottLarry and Jean KillenMadison KinneyDouglas and Susan Klee

Kermit and Bonnie KleinsmithRob and Sandra KorkoshKelly KottmeierKroger Community RewardJanice LappMary Louise LaurionStacey LauxSteve and Amy LavenEdward and Virginia LawlessBrad and Donna LindsayJim and Laura LinkChris and Danielle LowdenLubrizol CorporationJames and Lois MagisanoCatherine J Marshall Linda Matteson Brian McDowellChristopher and Nancy MeierMary Ellen and Edward Mendes-MonizMerck Foundation Peter A MetcalfMichael L. Smith DBA Mike’s Beer BucketKurt and Mitzi MontzCarson and Carolyn NeifertMelissa O’RourkeLarry and Becky PalmerGeorge and Colleen ParniczaPartnership for Cures DBA Noah’s HopeSteven and Cecelia PeiranoStuart and Patricia PhoenixPride International, Inc.Bernece PomeroyPorter County Chapter Of Thrivent Financial For LutheransLloyd and Leal PortisProspera Credit UnionThe Prudential Foundation Matching Gifts ProgramLaura V ReckerRob and Lisa RatzRobert and Annamarie RomanoRandy and Darlene RoyaltyCindy Schaller and Brenda DesenaThomas ScheviakDavid and Barbara SchlosserAnthony SchultzRichard and Sandra SellanSempra Employee Giving NetworkJohn and Jean SmithSpecialty Products & Services, Inc Aviation-Marine SpecialtyCarolyn SpillsonPhilip and Katherine SprogerDonald L StriplingSuper Heat, Inc.Cynthia Suprenant Thompson Reuters My Community Program Edward TiemeyerRon and Brenda TostensonJennifer Turk United Way Of Central & Northeastern

ConnecticutUnited Way California Capital RegionTracy and Jennifer VanHoutanJohn and Gail VaughanW and J VolnaNorma WeimanAngel WeirWells Fargo Community Support CampaignKen WolterFlorence A YodisYourCause, LLC Trustee For Hewlett-PackardElizabeth YoungsDaniel and Mary YstesundMary E Zulauf

Donations from these events were made to BDSRAthrough December 31, 2014: Art Auction In honor of Brady Regehr

Bake Sale In memory of Hudson and Leila Mimlitsch

12th National BDSRA Fall Candle Sale In memory of Emily Thompson

Hair Bow SaleIn honor of Jacob Geer

Lemonade StandIn memory of Jake Medley

Makeup Geek SeminarIn honor of Annie Allio and in memory of Catie Allio

Surrey Family Garage SaleIn honor of Lauren and Michele Surrey

T-shirt Sale In honor of Olivia Lewis Approximately $51,000 was donated to BDSRA for research and services.

Please direct any questions or concerns regarding this list to Tracy Kirby at [email protected] or (800) 448-4570, ext. 13. Thank you for your continued support.

Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 21