For 30 years and with great pride, BDSRA has served families of children with all forms of Batten disease -- of which there are 14. A full complement of support services is available to families including a large family conference held each summer, a vibrant online community for support and education, grants for equipment needs and more. BDSRA’s research program has funded registry, animal model, biospecimen collection, and other major building blocks important to crosscutting Batten scientific and drug development progress. With many others in rare disease, we advocate for a brighter future for all, by building coalitions, educating decision makers, and representing the important patient voice whenever possible.
From the BDSRA’s Board of Directors, staff, and our research and clinical partners, we acknowledge and thank you. Enjoy reading about this community that thought it could—and has, for 30 years.