January 2016                                                                                                                      Volume 27, Issue 1
In This Issue
BDSRA Welcomes New Board Members
Board  elections  were held in December 2015, and four candidates were on the ballot for two open  positions .  Elected to a three year term is returning board member Tony Ferrandino and new board member Kristen Drago.


BDSRA Resource Corner
Need Financial Assistance to Attend This Year's BDSRA Conference?

Tapping Into Your County Developmental Disabilities Family Support Program



In Loving Memory
Donor Gifts
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.
 
Fundraisers and Events
Once again we are amazed by the fundraisers and events that are held and donations sent to BDSRA. Please click here to see the full list.
Welcome to the new BDSRA monthly newsletter. We will be sharing more information with you more often.  This replaces our quarterly format.

Research Updates
2016 is going to be a big year for translational research-from bench to bedside, thanks to researchers who have benefited from BDSRA families' funding efforts.  Great strides are being made in the gene therapy world for Batten.   Full article


Registry News
In November, BDSRA staff joined global Batten research and clinical partners of the DEM-CHILD Batten Disease Registry in Hamburg, Germany. It was an exceptional two full days of meetings to discuss how data from around the world can and has helped to inform clinical trials, treatments, quality of life of patients and more.  BDSRA, along with funding partners Noah's Hope/Hope 4 Bridget, have helped make significant advances in the registry and what is known globally about Batten disease.


Denver Families Enjoy A Winter Afternoon Together

On December 27th in Parker, Colorado, BDSRA families came together for a fun afternoon of chips, salsa and conversation.  Because of donors who support these Batten Family Meet-ups, we are planning more opportunities for connection and fun throughout the year. Thank you to the Whobrey, Pena, Maynard and Hiltman families for attending! 

Quick Links
Fundraisers
Giving Back
Agnes worked with the Gahlbeck family for almost 6 years and wanted to do something to give back, so she challenged her family and friends to complete a Spartan race.They took her up on her challenge and over $1000 dollars was donated to BDSRA in Ethan's memory.

Light Up the Night
In memory of a young child she knew, a Wooster OH resident organized a "Light up the Night 5K and Kids Run" last fall. There were over 300 runners and over $2000 was graciously donated to BDSRA.

Saturday Morning Sunshine
On a beautiful November Saturday morning hundreds of people showed up at the Scioto Audubon Metro Park in Columbus OH to support the Battling Batten Disease 5K Run and Family Walk in memory of Celia Betz.  Many volunteers worked for months to organize the event, and because of their dedication over $9800 was donated in Celia's memory.

Batten Disease Support and Research Association | (614) 973-6013 | tkirby@bdsra.org | http://www.bdsra.org
1175 Dublin Road
Columbus, OH 43215