Advocacy Toolkit
Each year BDSRA staff, board members, and parent advocates travel to Washington, D.C. to meet with legislators and appear before committees to push for accelerated drug discovery, increased services for those with rare disease, and improved FDA processes and other initiatives important to our families. Along with the Rare Disease Legislative Advocates, we join with other patient advocacy groups to speak for those who cannot.
BDSRA board, staff, and volunteers have also advocate across state legislatures during Rare Disease Day and Batten Awareness Weekend to raise awareness and increase research related funding for NCL studies. Parents of children with Batten disease have testified to committees in numerous state legislatures on a range of issues, including access to medications, accessibility, and support for services to those caring for patients with life limiting illness.
In 2013, Batten disease advocates appeared on program panels of the National Institutes of Health and National Institute of Medicine to discuss medical and ethical ramifications of gene therapy in rare disease research. In February 2014, our Batten team from BDSRA, Taylor’s Tale and Noah’s Hope visited over 40 Congressional offices on Rare Disease Day to talk about the care needs of Batten children and push for drug discovery.
Parents and board members also have testified before the FDA during public meetings and panels on patient and caregiving challenges for rare disease. Legislative alerts, testimony and panel opportunities, and FDA updates are made available to the Batten community through BDSRA communication channels.
BDSRA actively engages in educational initiatives within the medical community nationally to inform and educate physicians, neurologists, nurses, allied health professionals, genetic counselors and palliative care specialists about Batten disease, the diagnostic challenges, and research and support services available to families.
Resources for rare disease advocacy also include:
Rare Disease Week
Click here to learn more information about Rare Disease Week on Capitol Hill, occurring February 28th-March 2nd, 2023.
State/Local Initiatives
Click here to learn more about finding your State Representative, using your voice, and how BDSRA can help.
Hometown Efforts
Click the icon below to learn more about how to fundraise, resources for contacts, and how to share your story.
June 9th International
Batten Awareness Day
June 9th of every year is designated as International Batten Awareness Day. Families, their advocates, and supporters bring the message of hope and awareness of the disease to thousands of people and inspire charitable gifts to BDSRA. Through social media campaigns, hometown fundraisers, school and church events, and awareness projects, volunteers explain their connection to Batten disease and the importance of raising funds for support and research. BDSRA hosts an annual fundraiser that raises funds to help further our mission.
2024 International Batten Disease Awareness Day
Not only did we reach our $75,000 fundraising goal in 2024, we surpassed it by over $9,000! We here at BDSRA continue to be amazed by our Batten community’s determination, persistence, and support. Thanks to you, we can provide five travel stipends for our community to attend Rare Disease Week on Capitol Hill, continue to support Batten families through grants such as the Equipment Exchange Grant, engage the community through virtual events, and much more. From the bottom of our hearts, THANK YOU!
Recent News
The Latest BDSRA & Batten Disease Community Events and Updates
Included in this email update: Batten Disease Global Research Initiative Update The return of the International Batten Disease Awareness Day T-Shirt Design Contest Conference Grant applications Rare Disease Week Recap Fam Funds Update Newsletter [...]
IT’S RARE DISEASE DAY! 🦓 Here’s what we got going on
THERE'S LOTS GOING ON! TODAY'S Nationwide Panda Express Fundraiser FINAL DAY to contact your reps using our Advocacy Module A clinical update Rare Disease Week highlights & reports A SIBs event TOMORROW (Saturday) Read [...]
CLINICAL UPDATE: Tern Therapeutics Gives CLN2 Batten Disease Update
The following letter from Tern Therapeutics shares the latest on TTX-381 and TTX-181, gene therapies being developed for the treatment of CLN2 Batten disease. Read the PDF of this letter here. February 27, 2025 Dear [...]
TAKE ACTION for the Batten Disease Community
While Rare Disease Week on Capitol Hill attendees meet with legislators and their staffers today, you can advocate wherever you are! It’s quick and easy! Take a couple of minutes and send a pre-written [...]
BIG BATTEN DISEASE FUNDRAISING NEWS…and a new event!
28% of Panda Express Online Sales go to BDSRA on Feb. 28! Thanks to the Palermo family, a NATIONWIDE fundraiser will be held for the BDSRA Foundation through Panda Express on Rare Disease Day [...]
Gretchen Fieschko Joins BDSRA Foundation Board of Directors
The BDSRA Foundation is thrilled to welcome Gretchen Fieschko to the Board of Directors! Gretchen brings experience and compassion to her new role at BDSRA. For over three decades, her career in biotech and pharma [...]
