Ben Raskin-Gross and Julie Raskin participated in Rare Across America initiative sponsored by the EveryLife Foundation. This initiative empowers advocates to meet with the staff of members of Congress at their local district offices. Ben and Julie shared their personal stories and advocated for issues of great importance for the congenital hyperinsulinism and broader rare disease community. Ben focused on the importance of Medicaid for children and adults with rare diseases. He shared what a lifeline it is for him. He asked the staff members to share with their members of Congress his opinion that the future cuts to Medicaid proposed in the Big Beautiful Bill be restored. Medicaid makes it possible for Ben to stay healthy and live independently in the community. Among many topics, Julie advocated for reauthorization of the Rare Pediatric Disease Priority Review Voucher Program. This program expired on December 20, 2024. It is a powerful incentive for biotech companies to develop new treatments for rare pediatric conditions, and unless it is reauthorized these vouchers will no longer be given after September 30, 2026. Ben and Julie also supported the other “asks” of their group of wonderful advocates, including restoring NIH funding and the Accelerating Kids’ Access to Care Act (AKACA).
These photos are from an in-person meeting with Chris Williams, Director of Community Engagement and Grants for Congresswoman Mikie Sherill, and Julie Jochem, Legislative Director at the US House of Representatives, who beamed in virtually.
