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.
Recent News
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 on Friday, February 28. This applies to ONLINE ORDERS ONLY at locations nationwide. Apply code 9001947 in the fundraiser code box during online checkout at pandaexpress.com or the Panda Express app on Friday, February 28 and 28% of sales will be donated to [...]
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 focused on global healthcare marketing and market development strategies. She found her work most rewarding in her regular collaboration with medical experts, scientists, patients, and their families, to drive earlier diagnoses, provide optimal new treatments, and expand the reach of those treatments to as [...]
