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:

www.rareadvocates.org

www.curetheprocess.org

www.rarediseases.org

www.globalgenes.org

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

Sharing Your Story

Sharing your journey with Batten is incredibly vulnerable, but we believe that vulnerability is powerful. It calls others to action and it is the reason we fight for treatments and cures for Batten. As long as we have hope, we have a story to tell.

Email Marketing & PR Coordinator Patrick Kotnik for more information!

Advocating In Your City and School

BDSRA is here to help in many ways.  Parents and caregivers can call our toll-free BDSRA Helpline, 1-800-448-4570, to talk with a  social worker about a variety of concerns.  We can connect you with resources and programs in your community including individual and family counseling services.  We help parents navigate their school system so they can access a free and appropriate education for their child or teen with Batten disease.  We also can connect you with other Batten families via email or by phone or as part of our Closed Facebook Group for Parents and Caregivers. 

To access this help or for more information, contact Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org.

Connecting With Your Local Department of Disabilities

All Batten families are eligible to apply for assistance through their local and federal governments. At BDSRA, we invite you to look into your local and state guidelines. If you need assistance navigating patient care or matters regarding Social Security Benefits, please contact us at info@bdsrafoundation.org. Each state has their own guidelines for care; however, we want to walk through the determination process with your family. To gather more information on SSI benefits, please visit: https://www.ssa.gov/benefits/disability/apply-child.html.

Recent News

BDSRA Board of Directors Announcements

July 28th, 2025|Comments Off on BDSRA Board of Directors Announcements

At the latest BDSRA Board of Directors meeting in Lincoln, Nebraska, on July 10, the Board of Directors conducted leadership elections. The new board leadership, effective January 2026 [...]

Batten Disease Advocates Applaud B.C. Government’s Reversal on Brineura Funding

July 18th, 2025|Comments Off on Batten Disease Advocates Applaud B.C. Government’s Reversal on Brineura Funding

July 18, 2025—Batten Disease Support, Research, and Advocacy (BDSRA) Canada, the BDSRA Foundation, and its Batten Disease Clinical Centers of Excellence (CoEs) applaud the British Columbia Government’s decision to reinstate funding for Charleigh Pollock’s life-sustaining [...]