I’m reaching out to you today on behalf of James and countless others affected by Batten Disease, a rare and devastating neurological disorder. The BDSRA Foundation has officially launched its 2024 Annual Appeal. Their goal is to raise $150,000 to support families through impactful programs such as the Annual Family Conference, which Cory and I were fortunate to attend this year in St. Louis, MO; fund and advance research to bring progress closer to families affected by Batten Disease; and provide hope by advocating for treatments and a cure, ensuring that no family feels left behind in this journey.

 Before the pandemic, there was real hope on the horizon. Several companies were actively working on gene therapy treatments that could potentially transform the lives of children and families battling this disease. Unfortunately, when COVID-19 struck, funding dried up, and many of these promising trials came to a halt.

 Now, as the world begins to regain its footing, these critical projects are slowly starting to restart. However, they desperately need funding to move forward. Every dollar raised through the 2024 Annual Appeal brings us closer to resuming these trials and advancing the science needed to find a cure.

James’s journey reminds us every day why this work is so important. The smiles, the courage, and the hope he and other children like him show inspire us to keep pushing forward.

 By donating to the 2024 Annual Appeal, you’re not just contributing to research—you’re giving us hope. Let’s keep the momentum going. Let’s reignite the stalled projects. Let’s keep pushing forward to the day when no family has to face the heartbreak of Batten Disease.

If you decide to give, please let me know either in the comment section below or by dropping me a line here.