ABOUT US
BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.
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ADVOCACY
RECENT NEWS
June Quarterly Grief Share Event 6/24/21 7pm EST
Please consider joining if your heart is heavy. We are here to listen and support along the journey. If you would like to join, please visit the link to register: https://web.charityengine.net/QuarterlyGriefShareQ2 If you have questions or concerns please reach out to Morgan DeBoth at mdeboth@bdsra.org.
BDSRA is looking to add Board Members
One the greatest keys to success for a nonprofit is an engaged board. Nonprofits need board members who can bring their expertise and their can-do attitudes to help advance the mission of the organization. Have you considered how you might serve? BDSRA is looking for new board members who want to dig in! Applications are due August 15, 2021. To apply click: https://forms.gle/ckvjgnrPxYfNzudJ9 With nearly 35 years in operation, the Batten Disease Support and Research Association supports patients [...]