May 2016                                                                                                                     Volume 27, Issue 4
In This Issue
Registration Deadline Approaching

June 6th is the registration cutoff date to get a conference T-Shirt! Be sure to order t-shirts for your Sibs so they can wear them on the outings!

June 21st is the final hotel and conference registration cutoff date!

Hotel reservations are now  being accepted by the  Renaissance St. Louis  Airport Hotel, site of this  year's Batten family  conference, July 14-17. 
To reserve your room 
please visit

Online conference registration is available here

BDSRA Family
Resource Corner
  Comprehensive Guide Explains Rights with Healthcare, Education and more!
Negotiating systems to obtain resources can be a daunting task for any parent.  The American Health Lawyers Association publishes the "Guidebook for People with Disabilities" which covers a range of topics that may be helpful to you and your family.  
In Memoriam

The Batten Disease Support and Research Association mourns the loss of Adina Ryan, former Director of Developemt, who passed away April 27th.  We are grateful for the donations made to BDSRA in Adina's memory.
Donor Gifts

The Batten Disease Support and Research Association has been remembered many times in the past two months by families and friends affected by Batten disease.
Batten Awareness Weekend

Batten Awareness Weekend is this weekend, June 4th and 5th

Join us this year to raise awareness in your community.

There is still time to register 
for the virtual 5K! 
You can complete your race any time during awareness weekend, June 4th and 5th.  A virtual 5K is just like any other 5K, except there is no official race location. Registration will be open until midnight, Sunday, June 5th (  You choose when, where and how you complete the 5K. Once you are done, log back in and enter your time.  You will have until midnight on Monday, June 6th to enter the 5K time.  (You do so by logging into your previous registration.  If you didn't set up an account when you registered you can do so here:

Click here for Batten Awareness Weekend social media logos, posters and more

Don't forget to order your Caitlin Rose Eyeshadow! 

Makeup Geek will once again make a matching donation to BDSRA for each Caitlin Rose eyeshadow that is purchased during Batten Awareness Weekend.
Get yours  here

Batten SIBS Inspire Us
(Megan Knight, Addie Heuchan, Brian O'Neill, Jeni Montavon, Kody Maynard and Sara Thompson)

Batten SIBS are incredible and inspiring.  They take care of their affected brothers and sisters, sometimes have their own plans disrupted because of illness, and navigate life with incredible courage and fortitude.   BDSRA has recognized these special sib needs for almost 30 years, especially at our annual conference.  Continue reading

Research Update

Moving Towards Effective Therapeutic Strategies for Neuronal Ceroid Lipofuscinosis

Read the article here

Quick Links
BDSRA Member
 of the Month
Sara Thompson, Batten sib and member of the Sibs leadership team, explains why membership matters to her.

Show Your Strength,
Become a BDSRA Member 
Why Join BDSRA? Because membership is a vital link to others
facing Batten disease, and membership strength is a leading indicator to policy makers and industry that Batten disease deserves attention, support and funding. Click here to join today!

Trivia Night

Ron and Lugine Hein hosted the 13th Annual Trivia Night and Auction in Columbia, MO. The evening included over 200 people, themed tables and lots of laughter.  $5,800 in proceeds from the evening were donated to BDSRA for support and research in memory of Austin Hein.
Run California Run

Kathy and Annie Allio
The 16th Annual Catie and Annie's Cops Relay took place last month in California.  It is a 199 mile run from Calistoga to Santa Cruz, and there were many teams and cheerleaders this year. Thanks to the generosity of all the participants, over $5,300 was donated to BDSRA in memory of Catie Allio and honor of Annie Allio.  

In Loving Memory
Batten Disease Support and Research Association | (614) 973-6013 | |
1175 Dublin Road
Columbus, OH 43215