the illuminator
TRANSCRIPT
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
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
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!
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
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.
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.
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.
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
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
educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope ★ educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope ★ educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope ★ educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope ★ educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope ★ educate ★ understand ★ advocate ★ hope ★hope ★ educate ★ understand ★ advocate ★hope ★ educate ★ understand ★ advocate ★ hope ★
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
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
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!
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.
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].
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.
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
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 15
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
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
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 17
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
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
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 19
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
20 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
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