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THE
ILLUMINATOR
Volume 26, Number 1 | Spring, 2015
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)
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
www.bdsra.org facebook.com/bdsra twitter.com/bdsra
JOIN US IN CHICAGO
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
2 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
spotlight on awareness
noah coughlan runs for rare
in his third tour across america
Noah 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.
pageant shines a spotlight on special
needs
This 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!
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 3
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 Hematology4Oncology
at the University
of Texas
Batten
Disease Support
and
Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
Southwestern
Medical
Center​
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.
A clinical trial for children
with CLN2 Batten Disease
uses the enzyme TPP-1 (BMN190) 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
The project funded by
on CLN1/PPT support using
the Batten Disease Family
the same approach for CLN1
Association in the UK, through
the BDSRA sought to determine disease. Future experiments to
prove the safety of the PPT1
the effect of administering
enzyme in at least two species
PPT directly to the central
nervous system of PPT deficient (a requirement for regulatory
agencies) and more detailed
mice by injection into the
efficacy studies for the final
cerebrospinal fluid, as in a
therapeutic product will also
spinal tap. About 80 mice
need to be done. Because
were used for the experiment.
the final therapeutic given to
Mice received no injections,
patients will need to be tested
injection of a solution of
in a variety of ways to ensure
artificial cerebrospinal fluid,
safety and effectiveness, these
or the same fluid with three
different dose levels of PPT. For studies are best done in the
context of a pharmaceutical
technical reasons only one set
of injections was performed, at company drug development
program. The results of the
around 6 weeks of age, which
is early adulthood for a mouse. study will make infantile
Batten disease/CLN1 an
Injected mice were subjected
attractive opportunity for drug
to motor tests throughout the
development. research related
lifespan. Data gathered so far
indicate that injected mice live to all forms of Batten disease.
longer, perform better on motor
tests and have improvements in
brain and pinal cord pathology.
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 5
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. 6 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
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.
www.bdsra.org
Have you liked
us on Facebook?
Followed us
on Twitter?
Find us and
join the BDSRA
conversation online!
facebook.com/bdsra
twitter.com/bdsra
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 7
Staff News
Who’s Who: Recent updates
at the home office of BDSRA.
Margie Frazier
Executive Director
From left to
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-S
Director of Family Support
and Education
Becky 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.
8 right: Beck
y, Tracy, M
a
Tracy Kirby
Director of Development
Tracy 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 nonprofit 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.
rgie and N
oreen
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.
Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
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Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 9
bdsra
bookshelf
the
Children’s Book Selection
Adult Book Selection
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.
“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.
“The Special Needs Parent
Handbook: Critical Strategies
and Practical Advice to Help You
Survive and Thrive”
by Jonathan Singer
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 Olivia
Children 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
10 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
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 island
The 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!
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 11
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.
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.
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
12 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
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].
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 13
in loving
memory
MARA ELISE NICK, daughter of
Robert and Alice Nick, Leander TX
Born: 10-9-91 | Died: 12-28-14
Juvenile
KESLEY SHUROS, daughter of Warren
and Lois Shuros, Eagen MN
Born: 3-22-86 | Died: 10-17-14
Infantile
ASHER NIKOLAJEVS, son of Victor
Nikolajevs, Berlin Heights OH and
Leisa Oakes, Milan OH
Born: 3-11-97 | Died: 12-20-14
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
BRYLEE GRACE HOLMES, daughter
of Joseph and Stacey Holmes,
Decaturville TN
Born: 3-6-09 | Died: 12-16-14
Late Infantile
DREW FERRANDINO, son of Tony
and Katie Ferrandino, Newton PA
Born: 2-1-02 | Died: 9-30-14
Late Infantile
ADDISON KURTZ, daughter of
David and Cathleen Kurtz, Glenview IL
Born: 8-8-06 | Died: 11-15-14
Infantile
GRACIE ELLA STANCOMBE,
daughter of Michael and Maria
Stancombe, Merrimack NH
Born: 4-27-05 | Died: 9-24-14
Late Infantile
HAYDEN ELIZABETH THELAN, daughter
of Eric and Christine Thelan,
Two Rivers WI
Born: 1-4-06 | Died: 11-9-14
Infantile
SOPHIA GRACE CRAWFORD,
daughter of Jacob and Jamie Crawford,
Lexington KY
Born: 11-17-11 | Died: 9-17-14
Unknown
AUDREANNA ESTEEL ALBAUGH,
daughter of Joseph and Melissa
Albaugh, Toms River NJ
Born: 4-4-95 | Died: 10-19-14
Juvenile
ALI BRIONNE VISE, daughter of
Scott and Donya Vise, Hot Springs AR
Born: 7-9-07 | Died: 9-16-14
Infantile
14
WILLIAM HUDSON MIMLITSCH,
son of Jerry Mimlitsch Jr. and
Brittany Butcher, Elizabeth City NC
Born: 12-19-04 | Died: 8-28-14
Late Infantile
AARON LESHKO, son of
Robert and Mary Beth Leshko,
McAdoo PA
Born: 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.
Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
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 Allio
Benjamin and Colleen Caddock
RA and MM Easton
Cindy Farmer
Makeup Geek LLC
Janet Schroder
THOMAS ANDERSON
Kurt and Joyce Moser
MARILEE BALL
Stephen and Bonnie Thompson
DOLLY BERNS
Stephen and Bonnie Thompson
KATE BENROTH
Ellie Benroth
-In Honor of Her Birthday
Sandra Benroth
Gordon and M Jane Donnelly
Britt Menchhofer
SOPHIA BIGELOW
Heidi Bigelow
Rebecca O’Dell
LOGAN BOONE
Rhonda McDowell-Miller
WILLIAM BRADDOCK
William and Gwen Cotton
DANIELLE and HOLLY CARBREY
Michael and Jo Diane Carbrey
Karen Fitch
Jerome and Shaaron Gajdosik
Ray Elder and Amelia Gonstal
John and Antoinette Schreck
Jane Wendling
THE CARBREY FAMILY
TCG Consulting LLC
NAOMI CAUGHEY
Kimberly Cannon
Rob and Ann Caughey
BECCA COLLINS
Thomas and Patricia Cronin
Thomas and Mary-Jo Mack
James and Roberta Ready
Maureen Ready
Paul and Carol Rezmer
EMILY COLLINS
Tommy and Patsy Davis
GARRETT COYNE
Garrett the Grand – Batten Fighter
Denise Hart
Jim and Laura Link
Lori Long
June Mizrahi
Thomas and Joan Nawrocki
Kevin and Theresa Reid
Kristen Voltz
ZACHARY CRAMER
Garry and Pamela Cramer
Michelle Peiffer
CLIFFORD DAHL
Brian and Karen Anderson
Adriana Colindres
Mr. and Mrs. David Dahl
Dennis and Carolyn Dahl
Randy and Ellen Dahl
Susan Dahl
Friends of the Chatham Library Café
Darin and Kristen Lahood
Amy Nelson
Diane Parker
Chuck and Diane Richert Parker
Mr. and Mrs. Eddie Rodriguez
Jennifer Wernsing
THE DOCKTER FAMILY
Gabriel and Angelina Sparandera
KENNETH DOCKTER
Antonio and Ellen D’Esposito
Anthony and Virginia DiMaggio
Gene and Edie Dockter
Stephen and Francine Kettyle
SAM ENGMAN
Nathan and Sarah Engman
Memorial Lutheran Preschool Smith
RYAN FARET
Elna Faret
Eric and Lisa Faret
Robert and Mary Hasbrouck
Rodney Schabel and Gunhild Hendrickson
Edward and Veronica Snyder
James Thomas
Denise Wright
Helen Wernlund
PARKER FARRERO
Joan Johnson
LEAH FITZGERALD
Richard and Clare Meyer
Karyn Meyer-Berthel
Donna Fitzgerald
Marilyn Gulotta
KELLEY FORSTER
Jeremy and Elizabeth Forster
MARGIE FRAZIER
Arturo and Kara Abarca
MARGIE FRAZIER and DAVE LIPPERT
Steve and Ann Keller
NICHOLAS FREEMAN
Lucille Allegretti
KELSEY FULLER
Douglas and Pam Fuller
ETHAN GAHLBECK
Gale Vance
MACEY GARRISON
Jen Seferyn
JACOB GEER
Sophia Geer
Steven and Kathleen Northrup
LEAH and CARSON HAMM
Joey and Kristy Hamm
KELSEY HARDIN
Bruce and Diane Arkley
Geoff Schiller
Bryan and Jacqueline Williams
FRANK and BRIDGETTE HARRISON
Ezzie and Mary Frances Harrison
Dan and Julie Heath
THE HAWKINS FAMILY
Martha Berkebile
Garett and Christine Lederer
JEREMY and BRANDON HAWKINS
Margine Benson
Steven and Tricia Fox
Chris and Wendy Hawkins
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 15
NICHOLAS HEUCHAN
John and Tina Heuchan
JOHN MANGUM
Mike and JudyLynn Mangum
ASHLYNN RHODES
Shawna Rhodes
JENNA HILL
Janet Denti
JoAnn and Brian Hill
WESTLEY MCKINLEY
Thomas and Cecily Bow
Frank and Jo Webster
RICKY RICKETTS
Mathew and Hilary Cooley
BRYLEE GRACE HOLMES
Make-A-Wish Foundation of the Mid-South
TALAL and SANA MEHMOOD
Syyed Mehmood and Sajida Kamran
NATHAN HOOVER
Ron and Barbara Essinger
MILANI FAMILY
Jeff Van Spankeren
JESSICA HYNIE
Larry and Jacquelyn Reichardt
Martha Skelly
Kathryn and Kathy Twisselmann
JEFF MONTAVON
Gofore Hole, LLC
Courtney Jonsson
Robert and Donnalee Klatt
Rebecca Lamkin
Angela McConnell
Charles and Tini Montavon
Phalen Steel Construction Company
Lori Vermeland
Danny and Kathryn Windland
NOAH JOHNSON
Anonymous
Audio 31 Music
Eugene and Christine Cloutier
Dennis and Sharon Depoi
Jeffery and Traci Dudan
Gregory and Jamie Ferguson
Howard and Myra Flick
JC and Susanne Jones
Janes and Sandi Lewis
Stephen and Jennifer Peck
Robert and Wendi Popoff
Michael Pross
Tim and Maria Ramsey
Hans Christian Rehart
Michael and Tara Reeves
Michael and Meg Sileo
Veronica Vagnone
LANCE JOHNSTON
Anonymous
HINA KAMAL
Nohad Hanna
BRIDGET KENNICOTT
Robert and Karen Jensen
Janice Jensen
ERIC and MCKENNA LOWDEN
Tony and Jayme Blalock
Keith Lowden
I. W. and Margaret Stephenson
Lila Thome
TAYLOR KING
Mom and Dad
Lottie Sutton
MATTHEW O’LEARY
James Breen
Richard and Carol Geer
Donna King
Sarah Kipp
KATELYN PAULING
Chippewa County – Montevideo Hospital
Allen and Melissa Anderson
David and Rebecca Arndt
Tommie and Darlene Boike
Edward and Pamela Delf
David and Adriane Harper
Tina Klosterboer
Erik and Vicky Moe
Natasha Neumann
Kelly Quigley
Mark and Wendy Peters
Kenneth and Sharon Rupp
Peggy Schumacher
Beverly Winters
THE PFOHLS
Elizabeth McBroom
JOEY RANKIN
Ashley Heisler
CHRISTINE RATZ
Philip and Ann Hovis
Kate Oshima
Sheri Ratz
BRIAN KOTTMEIER
Jeff Krier
MABEL LARSON
Kaycie Clayton
THE LOWDEN FAMILY
GL and Ann Harris
MR. and MRS. MARTIN LUMM
Annabelle Kepler
16
DOUG and JOAN MORISSETTE
Brian Hill
BRADY REGEHR
Anonymous
Elise Bird
Encana Oil and Gas, Inc
Randi Fenton
Becca Loppacher
Jim and Yvonne Schlosser
MASON SMERDEL
Bernadette Demoura
Edward and Katey Kowalski
Marianne Terry
Thomas and Judith Uline
KRISTIN SMITH
Thomas and Diane Fogle
David and Kathy Hultgren
Porter County Community Foundation, Inc
James and Linda Smith
Richard and Janice Steinbeck
Marianne Terry
MICHELLE and LAUREN SURREY
Marion Rissman
ADAM TAYLOR
Randy and Lori Parsons
Maryon Williams
BONNIE JO THOMPSON
Douglas and Martha Thompson
RICK and NADINE THOMAS
Christine Thomas
REX TIMKO
Doug Crates
Taryn Josephic
Mary Ann Snyder
LAINE VANHOUTAN
Brandy Staker
NOAH and LAINE VANHOUTAN
Madilyn Abernathy
Jeff and Theresa Arnold
LUKE and RACHEL WATSON
William and Jackie Richards
NICHOLAS WELLNER
Amie Broesder
IN MEMORY OF:
AUDREANNA ALBAUGH
Richard and Audrey Albaugh
Larry and Veronica Asay
Darin and Kristen Ashbaugh
Audean Bleutge
Christine Gutowski
Alain and Janie Isnard
Floyd and Melodie Smith
CATIE ALLIO
Joseph and Kathleen Allio
Benjamin and Colleen Caddock
RA and MM Easton
Cindy Farmer
Makeup Geek LLC
Janet Schroder
Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
REY ALSEMGEEST
Anonymous
Stephen and Mary Balanowski
Christina De Vincenzo
Carmen Devincenso
Harry and Anne Giesen
Thau V Lang
Libro Credit Union
Miranda Mattucci
John and Mary Michiels
Nor’West Venom Soccer Team
Vince and Mary Quinn
Andrew and Kathryn Rivett
Yvonne Rudgen
John and Janet Ruypers
Tracy and Jennifer VanHoutan
Stephen and Wendy Vens
Bert and Annie Verhallen
Mary Ann Verosted
DEON AMOSAH
Brenda Bender
TYLER AMOSAH
Brenda Bender
KARI ANDERSON
Gregory Nelson
LAURA ANLAUF
George Renier
CURTIS ANTHONY
Curtis Anthony’s Hope
JEFFERY BALZER
Jeannie McCormick
CELIA BETZ
Tim and Jan Betz
Sally Betz
Kathryn Burris
Daniel Chernick and Sarah Zeller
Sandy Ferguson
Marilyn Halstead
Chelahnnhe Lyons
Johnnie and Bonny Marcum
Kimberly Patterson
Michael and Elaine Rankin
Gary and Karen Rawson
Joan E Schmidt
Lisa A Y Schmidt
Phillip and Carlene Starcher
Cory and Bridget Vaudt
Mike and Mary Wendel
MARK BINDL
Bill and Dorthy Bindl
KIMBERLY and COREY BINGHAM
Margaret Bingham
LYNN and LESLEY BLAKE
James and Maryalice Blake
Susan Gaveline
JEFFERY MICHAEL BOBBY
Michael and Carol Bobby
AMY and MICHAEL BOER
John and Brenda Boer
ABBY BORTZ
Daniel and Karen O’Conner
EMILY BORTZ
Ryan Bornbach
MARY ALICE and ABBY BORTZ
Barbar Dodd
AIRON BOLEY
Brandy and Don Boley
DANIEL BREUER
Dad
HUDSON BUTCHER
Tracy and Jennifer VanHoutan
ZICHAELA CAFFEY
Tracy and Jennifer VanHoutan
CASEN CAMERON
Adam and Kaela Baumbach
Abigail Rivera
Tracy Purcell
Jeffery and Jennie Schultz
MICHELLE CARLSON
Mark and Kathleen Carlson
Michael Flynn
TREVOR CASTLE
Betty Jo Eaton
HANNAH CAULFIELD
Amy Caulfield
Dad and Lori
CARMEN CEO
Barry S Jones
Jeffery Reynolds
ALLY CHANCE
Charles and Rose Chance
Jody and Kim Chance
ANN CHOROMANSKI
Ray Edler and Amelia Gonstal
Marcella Kliethermes
Walter Schaeffer
CARLA CHOW
John and Geraldine Bixler
GRETCHEN CLENNON
Mike and Donna Dodge
DYLAN CLASPILL
Valerie Mobley
RYAN COOPER
Robert and Glenda Cooper (Corky)
SOPHIA CRAWFORD and ALI VISE
Anonymous
Kelly Kottmeier
SOPHIA GRACE CRAWFORD
Anonymous
AMR Management Services
Sheila Bentley
Jennifer Cranfield-McDaniel
Ed Phillips, Inc
Marie Ferrara
FirstGiving
Jessica Hawes
Alexandria Hernandez
Roberta Jones
Kristine Kelly
Tricia Langley
Ralph March
Christy Morris
Amanda Noel
Reid and Elizabeth Polome
Brandee Prosser-Dotson
Esther Rodriguez
John Ruffin
Julie Walczak-Schneider
Kate Ware
JOHN CROY
Stephen and Bonnie Thompson
CLAY CUNNINGHAM
Community Foundation of Louisville
Depository, Inc
Dave, Jane, Fowler, Claire, and Cauley
Cunningham
AL DAVIS
Candice Dodrill
Jeff Frodge
Betty Ruth Fry
Judy Mason
Michael Silver & Co
Kathy McElligott
Larry Omo
Gerald Peirce
PTS-IT Southwick
James and Linda Smith
Larry Tumbleson
CASEY DAVIS
Paul and Julie Bell
CAROL DARNTON
Stephen and Bonnie Thompson
MEGAN DEPEW
Greg and Diane Stacey
KANE DEGEORGIS
Linda Crain
Doris Davis
Martha Massey
CATE DIBBLE
Christopher Brauneis
RA and MM Easton
CHRISTOPHER PAUL DICAPUA
Fred 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
LOGAN and GREGORY GREEN
Bevers Pharmacy
EMILY DUGGER
Danny and Sara Dugger
James and Kathryn Kerlick
Gerald and Nancy Ragland
Richard and Teresa Rose
Steven and Amy Summers
Woodruff Supply Company Employees
TRACY LYNN GUERTNER
Ronald and Barbara Ouellette
PETER EDWARDS
Anthony and Donna Barkowski
STEPHEN HATCHETT
Susie Wilee
RICK and STEVE ELLERBROCK
Dennis and Nancy Rosengarten
AUSTIN HEIN
Todd and Patricia Baucom
Cheryl S Dunham
Robert and Audrey Fink
Doris Glatz
Heart Of America Chapter BDSRA
Martina and Helen Katz
Donald and Catherine Hollenberg
Michael and Janine McGovern
Robert and Esther Negwar
Lorine Pelletier
Ken and Lexine Pranschke
Paulita Pranschke
David and Linda Senter
Gary and Gail Voss
TRAVIS FAIR
Bob and Marie Amass
Rob and Linda Craig
Ronnie and Nancy Lee
T FARET and IN HONOR OF B FARET
Dennis Olsen
DREW FERRANDINO
Drew’s Hope
Gary and Janice Schenck
JEREMY FIELDS
Cecelia Fields
AMANDA FITZGERALD
Donna Fitzgerald
Marilyn Gulotta
Valerie A Johnson
KATE ELIZABETH FRANK
Paul and Linda Frank
SARA GEDEON
Tomas Gedeon
JR GODFREY
Richard and Katherine Godfrey
KERRICK and CHRISMOND GOLL
Beverly Goll
CONNIE SUE GRANDLE
Kim and Margaret Mudgett
Zane Grey Ole Auto Club
GREGORY GREEN
Shawna Baas
Cary and Carol Colglazier
Joe and Donna Gerringer
Melissa Maxie
Kaleb and Lindsey McKinney
Sue Mellencamp
Jerry and Fran Molker
Kevin and Tammy Riorden
Charles Vance
Rodney and Margie Willman
Dwight and Robin Wischmeier
TYLER and RYAN HAXTON
Tim and Marsha Bagby
ELIZABETH JOHNSON
Judith A Haynes
Keith and Alice Johnson
LAURIE and DONALD JOHNSON
Arlyn and Mardell Johnson
LORENA JOHNSTON
Carol Pryor
TY HICKS and MORGAN HICKS-HOPKINS
Donna Crawford
HAYLEY JOYCE
Robert and Mary Krause
DANNY HOUGHTBY and MICHELE
SHERIDAN
Susan Bradley
BRET KILLEN
Larry and Jean Killen
CHROSTOPHER ISNARD
Mom and Dad
Gilbert and Anne Baruch
Gregory and Jeanne Metzler
CHRIS GAINES
Alabama Chapter BDSRA
18
KOURTNEY DANIELLE HARMON
Thomas and Diane Fogle
Gregory and Jamie Ferguson
Howard and Myra Flick
Peggy Foster
Pat Hopkins
JC and Susanne Jones
Benjamin and Rita King
James and Sandi Lewis
Dorothy Loudon
Stephen and Jennifer Peck
Robert and Wendi Popoff
Michael Pross
Tim and Maria Ramsey
Michael and Tara Reeves
Hans Christian Rehart
Michael and Meg Sileo
Eldon and Patricia Steiner
Veronica Vagnone
Gary and Katharyn Wetzel
JW and Dora Westfall
JULIE KLEE
Mom and Dad
Howard and Susan Schub
LEVI KNOWLES
John and Linda Niemi
BOB JENKINS
Stephen and Bonnie Thompson
DANIEL KOERNER
Susan Steinberg
JAY JENSEN
Mary Jensen
ADDIE KURTZ
Karen Shankman
JAMIE JERCHA
Mark and Linda Jercha
MARY LAMARRA
Tim Gallgher
Dennis Gallagher
JAMIE JERSHA
Donald and Margaret Blank
Brian and Nancy Reese
Anthony and Loretta Tomich
COURTNEY JOHNSON
Anonymous
Audio 31 Music
Ronald and Marcelina Britton
Kenneth and Betty Brown
Joseph and Phyllis Braunsberg
Eugene and Christine Cloutier
Rodger Danner
Dennis and Sharon Depoi
Steven and Colleen Dowiat
Jeffery and Traci Dudan
JUSTIN LAVEN
Robert and Jeanne Hagen
Neil and Leslie Nelson
JULIA ANN LEFFLER
Joyce Baffi
Jim and Cheryl Brown
James and Ellen Crawford
Clarenece and Margaret Davis
Ann Frazier
Linda Hall
Valta Hartstern
Steve and Elaine Jones
John and Helen Key
Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
Charles and Wanda Leffler
George and Betty Anne Lennon
Kevin and Michelle McKiernan
Al and Kathy Rankin
Laura Ratchford
Barbara Spencer
John and Susan Suggs
Noah and Amy Toomey
Bob and Shirley Usry
Andy and Jennifer Willis
NOLAN LEIS
Harry Beal
Stanley and Carol Clements
Rudy and Pat Herrewig
Jim and Jill Thompson
MATTHEW and RICK LOWTHER
Curtis and Deborah Lowther
MATTHEW LOWTHER
George and Roberta Parnicza
KEVIN LUMM
Martin and Vicki Lumm
RYAN MAYNARD
Chris and Margaret Kuffenkanm
Joel and Christine Maynard
Kody Maynard
Dennis and Denise Sacha
ROBBIE and STEPHANIE MAXIM
Mary Ann Asher
Madeline Stone
JONATHAN MCCOLLUM
Cary and Brenda Cobb
Daniel and Janet Eason
Barbara Flatt
Carl Gessner
Bob and Par Hatley
Kendrick and Jean Hurt
David and Wanda McCollum
Lillian Moser and Teresa Lambert
Harry and Carolyn Pike
David and Eleanor Roberts
David and Faye Robinson
Dwight and Irene Sharpe
Jerry and Fran Sherrill
Eugene and Joan Smith
Southeast Chapter BDSRA
Arthur and Jane Winstead
LEAH KATHRYN MCFARLANE
Sandra Phillips and Kristen Coon
Timothy and Kristin Coon
Leisa Strabel
MATTHEW MCGEE
Barbara Kelley
Kelly and Sarah Sapp
JAKE MEDLEY
D and A Barry
Christine Boyd
John Fannin
Shelcon and Nancy Ferdman
Rory Jenkins
Joujou, Inc
P Barry and M Lawlor-Barry
Gordon and Judith Litt
Dean and Jennifer Medley
Randall and Renee Rhoden
JOEY and BILLY MILANI
Erika Clas and Susan Milani
Victor and Ellen Marsh
Margaret McCormick
William and Cynthia Milani
May Newby
Kenneth and Eleanore Van Spankeren
HUDSON and LEILA MIMLITSCH
Chiyona Bourne
Barry and Caroline Esposito
Todd and Cori Parsons
Anthony and Suzanne Valenti
ASIT MUKHERJEEWITH
Sondra Levin
CHARLEE NELSON
Jeff and Catrina Nelson
KAREN NEWTON
Robert and Joann Newton
MARA NICK
Wendy Gentry
ASHER NIKOLAJEVS
Anonymous
Walter and Valentina Bachir
Sanford Black
Eric Brown Inc
Maurice and Jamie Fiocca
Robert and Ida Hastings
Paul and Carol Hiszem
Thomas and Stephanie Johnson
Aaron Krause
William and Susan Lucht
Marc and Susan Martter
Tony Pagrabs
John and Deborah Pankow
Andrew Schaffer
ZACHARY NOORDHOEK
Greta Noordhoek
Julie Carlson-Noordhoek
Tom and Julie Noordhoek
TIM NORDQUIST
American Family Insurance
LAURA NOWACKI
Patricia Lucey
Melissa Mann
Lynne Thomas
EVELYN NOWICKI
Sarah Pelham
Susan Robles
NATHAN OLIEN
Lorean Hall
Tom and Marla Nelson
K and D Turner
MEGHAN O’NEIL
James and Aileen Reasoner
Roy and Linda Palmer
DANNY ORTEN
Gerald and Lynne Flynn
DANIEL ORTLAND
Jack and Joan Kisch
John and Margaret Nicolich
Dave and Joan Ortland
Kirk and Anabela Rossi
PATRICK PAVLAT
Stephen and Bonnie Thompson
BENJAMIN PAYNE
Karen Payne
BARBARA PATTERSON
Susan Converse
JUSTIN PECK
Corey and Cheri Peck
DAVID PETTERSON
Ann Caldwell
SARA PFALLER
William and Christine Batalden
Casimer and Patricia Durava
Geralyn Hames
Benedict and Luanne Pfaller
Jean Walsh
DAVID PFOHL
Warren and Brenda Pfohl
Richard and Jeann Rybinski
MARCY, MINDY and MICHAEL PINDER
Randy Ansel
Pauline Ramsey and Michele Feeney
William and Pat Pugh
HOWARD PITTS
Faye Reynolds
LAURA POHREN
John and Karen Newell
STEFANI PUSKAR
Juhan and Inge Puskar
JAMES and MARK RICKMAN
Centa Corporation
RUTH VIOLET ROBERTS
Dan and Iris Van Caeyzeele
AMBER, SARAH, and SANDY ROYALTY
Mom and Dad
Andrew and Ruth Baer
Lynn Spraker
Mark and Joan Koenig
Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 19
CHARLIE SCANLON
Bill Haddad
Charles and Anita Scanlon
Paul White
SANDRA LU SCHATTLER
Lewis and Carol Schattler
COLLIN SCHMIDT
Kent and Karla Schmidt
KORRY and RACHAEL SHARP
Timothy and Ginger Dunne
Eugene and Keiko McCall
AMIEE and MONICA SHEERMAN
Richard and Linda Sheerman
MICHELE SHERIDAN
Casey and Faye Zaski
KESLEY SHUROS
Allan and Miriam Ahuros
Robert Bergsgaard
Donald and Carol Blegen
Howard Bornstein and Judy Russell
Carol Mallgren Boley
Kristin Bullock-Herman
Jennifer Li Caldwell
Tonya Carlson
Stephan, Diana and Susan Chabot
Craig and Sandra Cooper
Carol Cortez
Foth Co.
Dean O Gjere
Dr. D. C. I.
Bill Goebel
Chris Gondeck
Timothy and Debbie Grant
Jessica Graveen
Michael and LaVon Hammes
Matthew and Molly Hayen
Heyer Truck Line, Inc
Justin and Patricia Hornung
Thomas and Carol Hornung
Craig and Cynthia Hotvedt
Daniel and Sondra Hotvedt
Mark and Heidi Hotvedt
Janice Hotvedt
Curtis and Suzanne Hudak
Russell and Mary Imoehl
Kevin Johnson
David and Beth Kloeckner
Charles and Teresa Laham
Tom Madigan
Nancy Mangum
David and Julie Mayne
Nancy McLain
Reo Menning
Robert and Debra Milla
James and Becky Miles-Polka
Robert and Patricia Mohrbacher
Katherine Morris
20
Nicole Nicholson
Steve and Roni Oman
Anthony and Kristie Orifer
Kathy Osborne
Prime Lands, Inc
Resource Recovery Technologies LLC
Kirk Rosenberger
Janet Sanness
Bernard Schmitz
Norman Schiferl and Deborah Woodworth
Marian Sheilds
Charles and Judy Shuros
Lori Shuros
Warren and Lois Shuros
Joni Spaulding
Laura St. Mary
Stephen and Bonnie Thompson
Theodore and Martha Troolin
Michel and Ann Tubbs
Don Vogt
Gina Wilming
James and Jill Wellner
David and Mary Wittry
Steven and Janet Yngsdal
NATEY SCHWARTZE
Francis and Teresa Schwartze
LINDA SIVULKA
Mark and Bridget Podskarbi
EMILY and SHELLY SMITH
Robert and Cynthis Brannan
JACKSON SMITHERS
Robert and Alice Smithers
ERIKA SPAIDE
Miguel and Nancy Peruyero
Kim Spaide
GRACIE STANCOMBE
Don and Kathryn Levesque
Parents and Teachers of Thorntons Ferry
Angelina Perron
James and Judith Theokas
Tracy and Jennifer VanHoutan
MATTHEW STEWART
Stewart Fine Art
BROXTON TAYLOR
Danielle Chavez
Desert Gator Pools & Custom Concrete
Frank and Ann Gennario
JMAC Heating and Coolings Inc
Nextcare, Inc
Pinnacle Wealth Advisors, Inc
Two Guys Barber Shop
Albert and Laurie Vallarian
EMILY THOMPSON
Bonnie Jo Thompson
Sara Thompson
Stephen and Bonnie Thompson
David and Jessica Thompson
Winifred Webb
GRANT and RICK TISZAI
RJ and Deb Phillips
BRADLEY TYLER
Judith C and Robert Tyler
ALI VISE
Charlene Harwell
Tracy and Jennifer VanHoutan
EZEKYIEL VONDERHEIDE
Tracy and Jennifer VanHoutan
TYSON and TIMOTHY WEAVER
Steve and Stephanie Hanson
MICHAEL WHEELER
Pride International, Inc.
CAROLYN WILHELM
R Dennis Kelly
Thomas and Mary Shanks
Robert and Laura Wilhelm
DANNY WINDLAND
Danny and Kathryn Windland
LINDSAY and CASSIE WOLTER
Chuck and Mary Ditter
CHELSEY WORSTER
Rachel Hunter
Nina Morrison
MADDIE ZELLMER
Amelia Mann
William and Patricia Shell
Todd and Kimberly Zellmer
DAVID YAMAUCHI
Pauline Yamauchi
DANIEL YANAK
Les and Debbie Ham
PROGRAMS, SERVICES &
RESEARCH:
Advanced Cargo Corporation
Amira Al-Uzri
American Endowment Foundation
Anonymous
AT&T/United Way Employee Giving Program
Denise Babcock
Bradford and Alison Barry
BDSRA Alabama Chapter
BDSRA Canada Chapter
Bernard and Janet Behrenshausen
Joshua and Lindsey Bills
Wendy Bills
James and Maryalice Blake
Michael and Carol Bobby
Carl and Audrey Brooks
Bobbye Bryson
Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570
Joseph and Rita Burns
Lori A Buser
Everett D Butts
Constance Capp
CFC of Chattanooga Area
CFC of Delaware
CFC United Way of Central Ohio
NYC CFC
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Valley CFC
Combined Federal Campaign Eastern
Wisconsin
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Jeff Cwynar
Dennis and Carolyn Dahl
David Mitzel Construction
Morgan Cunningham
Tony and Kristen Depoi
Mark and Pamela Dimaria
Dr. School Foundation
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Gail Falk
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Charlotte Feldman
Donna Fogle
Melton and Marilyn Frederick
Friends of the Chatham Library Café
GE United Way Campaign
May A Gebhardt
The Giving Campaign Allstate
Give with Liberty, Liberty Mutual Foundation
Match
Thomas and Helen Gleason
Global Impact
Bernard and Selma Goodman
Goodshop
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Hospira Employee Giving Campaign
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Joy Page
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Rob and Sandra Korkosh
Kelly Kottmeier
Kroger Community Reward
Janice Lapp
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Stacey Laux
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Chris and Danielle Lowden
Lubrizol Corporation
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Merck Foundation
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Kurt and Mitzi Montz
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Partnership for Cures DBA Noah’s Hope
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Porter County Chapter Of Thrivent Financial
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Sempra Employee Giving Network
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Philip and Katherine Sproger
Donald L Stripling
Super Heat, Inc.
Cynthia Suprenant
Thompson Reuters My Community Program
Edward Tiemeyer
Ron and Brenda Tostenson
Jennifer Turk
United Way Of Central & Northeastern
Connecticut
United Way California Capital Region
Tracy and Jennifer VanHoutan
John and Gail Vaughan
W and J Volna
Norma Weiman
Angel Weir
Wells Fargo Community Support Campaign
Ken Wolter
Florence A Yodis
YourCause, LLC Trustee For Hewlett-Packard
Elizabeth Youngs
Daniel and Mary Ystesund
Mary E Zulauf
Donations from these events
were made to BDSRA
through 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 Sale
In honor of Jacob Geer
Lemonade Stand
In memory of Jake Medley
Makeup Geek Seminar
In honor of Annie Allio and in memory of
Catie Allio
Surrey Family Garage Sale
In 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 tkirby@
bdsra.org 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