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.
2025 International Batten Disease Awareness Day
A big THANK YOU to all of our donors, Fam Funds, families who hosted fundraising events, and everyone who shared our posts and advocated through our International Batten Disease Awareness Day activities! Your continued gifts, support, and advocacy are crucial so that BDSRA can continue to provide support to families in need, source research for treatments and cures, and advocate for equitable access to healthcare for families. With your continued support, we will accomplish this: https://ow.ly/saSG50Win9R
Recent News
Important Announcement: Building a Stronger Future for BDSRA
January 14, 2026 Dear Community, For 39 years, BDSRA has been dedicated to creating a world without Batten Disease. Our mission is to support Batten families, fund and facilitate research and advocate for treatments and [...]
BDSRA 2026 Annual Family Conference | Ideas from Batten Disease Community
Here’s a look back at some of the Annual Family Conference themes over the past four years! We need your ideas!! If you haven’t already, mark your calendars for the 2026 Annual Family Conference [...]
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The BDSRA Annual Family Conference is a haven for our Batten disease community. It’s where lifelong bonds and friendships are formed and where crucial information is learned. Your gifts to the BDSRA Foundation [...]
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Darlene Royalty “Darlene has been a valuable source for educating, understanding, and supporting our team at BDSRA. She cares deeply about the Batten community and the organization, and it was at the core [...]
Why fundraise for BDSRA and Batten disease?
“If every single person on the planet knew about what Batten disease was doing to kids, I think there'd be a cure by now.” Supporting fellow Batten families and finding a cure for [...]
