January 25, 2021

Batten Disease Support and Research Association, along with the BDSRA Board of Directors, is pleased to announce the selection of a new Executive Director to further their vision of accelerating science and providing vital family support services. The hiring of Amy Fenton Parker comes after an extensive search to find a compassionate and accomplished leader to guide the organization as they implement a plan of strategic growth in grant programs, collaborate in research and development, and conduct outreach and expand its advocacy initiatives. Parker’s passion and affinity for sharing the stories of need with those who most want to support the impact created from their gifts will be a tremendous asset to BDSRA’s mission.

Born in Ohio and raised in West Virginia, Amy returned to the Buckeye state upon her graduation from West Virginia University. After spending thousands of hours as a professional volunteer, she transitioned into a career in the non-profit sector. It was there she learned to develop relationships with donors, collaborate for meaningful grants and share the story of impact from those grants with donors, grantees, and the communities in which they support.
In Amy’s most recent work with The Diocese of Columbus, one of the oldest and largest Catholic Foundations in the United States, she managed the distribution of all grant funding, which grew from $5 to $13.5 million annually in her eight-year tenure. In her previous role, Amy served as a Senior Development Officer for the Mount Carmel Foundation, also located in Columbus.

A note from Barb Wuebbels, Vice-President of the BDSRA Board of Directors:
“We look forward to Amy growing our relationships with the scientific community and family foundations. Both groups are critical to our mission of providing disease education, furthering clinical research, and supporting our patients and their families.“

Founded by parents seeking to build a network around Batten disease, BDSRA is the largest support and research organization dedicated to all forms of Batten disease in North America. BDSRA offers several programs and services to support and inform families affected by Batten disease across the nation.


Contact Info: Amy Fenton Parker, 614-973-6011 or