2025 Rare Disease Week Recap
Advocacy & Fundraising
The Palermo family helped set up a nationwide fundraiser for the BDSRA Foundation through Panda Express on Rare Disease Day on Friday, February 28, with 28% of online orders going to BDSRA. Thanks to the wonderful Batten community who shared this fundraiser far and wide, over $2,300 was donated to BDSRA!
The Batten community took action by completing the BDSRA Advocacy Module – sending a pre-written letter to their U.S. congressional representatives, urging them to help prevent the proposed cuts to Medicaid, further cuts to federal health agencies and funding, and to support the Rare Pediatric Disease Priority Review Voucher Program.
Rare Disease Week on Capitol Hill Summary
Visit to Kennedy Krieger Institute
From cutting-edge research to compassionate, family-centered care, the Kennedy Krieger Institute (one of the Batten Disease Clinical Centers of Excellence) team is truly leading the way in advancing standards of care, and clinical research, and supporting the U.S. and global Batten disease community. A heartfelt thank you to Center Director Dr. Erika Augustine, Dr. Aaron Hauptman, Dr. Heather Brown, Dr. Jeff Doyle, and Nadia Moore for hosting BDSRA!
A Batten Grandfather’s Experience
Batten grandfather Mitch Larson, a Nebraska resident, details his experience advocating for the Batten disease community.
Mitch received a grant from BDSRA to attend Rare Disease Week on Capitol Hill.
Legislative Conference
Larson breaks down the Legislative Conference in Washington D.C. ahead of meetings with legislators and their staffers.
Meetings on Capitol Hill
Dr. Ineka Whiteman made the trip to D.C. all the way from Australia! She details the day’s meetings on Capitol Hill with legislators and their staffers.
Rare and Ready Meeting
BDSRA Database Manager Noah Siedman traveled to Bethesda, Maryland on Rare Disease Day (February 28) and spoke about his experience as a Rare Disease sibling at the Rare and Ready Meeting.
