We had our largest group yet: 290 eager and imaginative riders, walkers, and donors on the APBD Tour de Friends team participated in the 2023 Million Dollar Bike Ride (MDBR) on June 10. It was our eighth consecutive year participating in the rare disease research fundraiser hosted by the University of Pennsylvania’s Orphan Disease Center (ODC). 

This year, the team raised $100,000, including the ODC’s $30,000 match and another $30,000 from generous APBD community supporters’ match. 

The ODC ensures that 100% of the funds raised go toward research grants, with no overhead taken out. We’re thankful for the opportunity through the MDBR to rally support and funds. Over the years, the MDBR program has supported groundbreaking APBD research in Columbia University, Duke University, Hadassah Medical Organization, UT Southwestern Medical Center, Newcastle University, and the University of Florida. Including the Ride this year, we have raised a total of $736,000 to defeat APBD.

Alan Beletz, an APBD patient who participated in the 2023 MDBR in-person in Philadelphia, shared, “Having this ultra-rare illness, but still being able to participate made me feel and see how many more are truly affected. When I feel alone and ask myself, “Why me?” events like the MDBR remind me that there are many others.”

He found support and hope in the APBD and rare disease community through the fundraiser. Alan added, “I talked to many other orphans. We’re not the only ones with a life-altering illness, and because of the MDBR, there will be less and less as the tide changes in our favor.”

The turnout at the event in Philadelphia reminded Alan of the widespread impact of the disease. “Children and family are hit with this major change, not just the patient,” he reflected.

Harriet Saxe has captained the fundraising/cycling team for eight seasons and offered, “It has been my privilege to lead the APBD Tour de Friends in their efforts.. I am thankful for the powerful fundraising opportunity from the ODC, for every family member and friend who participated in honor of their loved ones, and for every dollar gifted to advance APBD research.”  

Our deepest thanks to each of you who participated in and gave generously to the 2023 MDBR for rare disease research.