September 2018                                                                                        Volume 29, Issue 7
A Letter from Margie 

Dear Friends,

It has been a profoundly meaningful and life-changing experience for me to lead BDSRA for the last 6 1/2 years. As I step down for respite and renewal I leave with incredible gratitude to this wonderful community, and optimism for its future.  

Together we've done so much in building programs, sponsoring research, having fun at conferences, showing the world of drug development what we're made of, and simply being present with one another. Thank you for the gift it has been! 

As I leave I feel so confident about BDSRA's incredibly committed, talented and compassionate staff who are ready to go into a very busy fall and winter. They will continue to represent the Batten community all over the world with you in mind every day. The BDSRA board, led by the incredible Rob Geer, remains energized and is moving quickly on all of the goals spelled out in the new strategic plan. I'm very optimistic about them finding just the right blend of leadership to do even more important work ahead. I know you will welcome those who come on board after me with optimism, support and great expectations.  

With love, and courage, and hope,
Margie Frazier
Accepting Applications for the Batten Family Help Fund

With the support of caring donors, including the BDSRA Family Conference attend ees in Nashville (2018), we have developed the Batten Family Help Fund. 

This pilot program will offer small grants to fill emergency financial gaps for families caring for a loved one with Batten disease.  We are excited to announce that we are accepting applications from families who need emergency funds. 

For mor e information or to apply today visit our  website.  
Board Nominations

The BDSRA Board of Directors has several open seats for the term beginning January 2019. If you have expertise you feel would be relevant and beneficial to the organization and are interested in learning more about serving, please contact the BDSRA board  at by September 10th. For information on specific skills desired please  click here

16th International Conference on Neuronal Ceroid Lipofuscinoses (Batten Disease)

BDSRA will be attending the NCL 2018 conference in London (September 12-15). This conference is the premier research conference for Batten disease research and is held every other year. While in attendance staff will meet with researchers, present on our work and meet with families. Follow our Instagram, Twitter and Facebook for live updates from the conference.

Travel Calendar for Fall

This fall the BDSRA staff will be traveling all over representing Batten families. If you are planning to attend or live in any of these cities let us know, we would love to see you! 

NCL Research Conference ( London, UK )
Global Genes (Irvine, CA)
NORD Summit (Washington, DC)
Child Neurology Society Conference (Chicago, IL)
National Society of Genetic Counselors Conference  (Atlanta, GA)
CLN3 Education Meeting (Copenhagen, DEN)
American Epilepsy Society Conference (New Orleans, LA)

New Vehicle Donation Program

The BDSRA has partnered with Vehicles For Charity to process donated vehicles. Donating your old vehicle to  BDSRA,  is convenient, easy, and may qualify you for a tax deduction. 

Best of all, your donation of a used car or truck will make a big difference in supporting BDSRA's mission. 

If you have a vehicle to donate, simply call      
1-866-628-2277 to make arrangements. 

Visit our website for more details!

Fundraising Highlight: Delaney's Dreamers

On June 9th in Lavale, MD, Delaney's Dreamers organized an Applebee's Flapjack Fundraiser in honor of Delaney Mickey.  They sold all 300 tickets for the breakfast, and also had a silent auction and a raffle.   This date happened to be not only International Batten Awareness Day, but is was the third anniversary of Delaney's diagnosis of CLN3.  Because of the support of their community they were able to donate $5,100 to BDSRA for research.  

Thank you to everyone who came out and supported the Mickey family!

Recent Fundraising Events

Thank you to the following hosts (and those not listed below who requested to be anonymous). Your time and energy to organize fundraising events to donate to BDSRA is deeply appreciated by our entire community. 
  • Dollars and Scents Candle Sale in honor of Celia Betz, Mia and Kaleb Diaz, Layla Graham, and  Tayla Riddle
This month we have new Facebook fundraisers organized by:
Your support makes our mission possible! 
In Loving Memory 

Remember with us those we have lost to Batten disease.  It's in their honor and memory that we work every day to build a brighter future for families.

Thank You BDSRA Community of Donors! 

Thank you to the donors last month who gave so generously to honor and in memory of loved ones and our community as a whole. We want to acknowledge you for your contributions. They allow us to keep serving families and advancing the science of a meaningful treatment. Your dollars and support have helped create the leading patient organization in the Batten disease community, and we are dedicated to continue that legacy of children and families. 

View recent donor gifts
Batten Disease Support and Research Association | (614) 973-6013 | i | w