Dear Friend,


The Million Dollar Bike Ride, hosted by UPenn, has been a source of inspiration and leveraged research funding for the APBD community over the years. 


Because of our eight Rides, over $700,000 in APBD research grants have been awarded. These pilot grants supported researchers at Columbia University, Duke University Medical Center, UT Southwestern Medical Center, University of Florida, Newcastle University, and Hadassah Medical Organization. This year, on June 8, we'll be participating in the MDBR again!

Why We Participate in the MDBR for Rare Disease Research

Five of our steadfast supporters share their perspectives:


Alan, who was diagnosed with APBD in 2021, was one of the in-person MDBR participants in Philadelphia in 2023. Once again, he will be rallying Team Beletz for this year's event. Reflecting on his experiences last year, he shared, "Having this ultra-rare illness, but still being able to participate made me see how many more are truly affected. When I feel alone and ask myself, 'Why me?' events like this remind me that there are many others.”



Rob continues his support of the MDBR for rare disease research because he's witnessed the progress. “I have been in direct contact with the researchers who used the funds we donated last year. I’m encouraged by the research being furthered as a result. All these efforts need even more funding to find the treatments we must have.”  


Harriet Saxe, a driving force behind the APBD Tour de Friends team shared, "There had been no treatment options for other Saxes, but I am determined to change the story for my husband Chuck and other patients with APBD. Through our partnership with UPenn’s Orphan Disease Center, funds raised through this event are accelerating APBD research and bringing forth important discoveries."


Last year, Robin mobilized her friends and family to support fundraising efforts for the diagnosis shared by her husband and her brother-in-law. "I was deeply moved by the overwhelming support, especially when my son chose to ride the 70-mile route instead of the 10-mile one. As everyone on the sidelines cheered for the riders, we felt a sense of unity among the rare disease community, all striving for awareness, funds, research, and hope.”


Susan Coddon, a member of the APBD Research Foundation’s Board of Directors expressed, "This partnership gives patients and families hope and a future, advancing vital APBD research and accelerating promising discoveries. Finding treatments and a cure for APBD was important to me when my husband LD was alive, and it remains just as important today."

Your gifts are matched!

The APBD Research Foundation’s Board of Directors will MATCH the first $40,000 raised - as long as the donation is made by May 10th. 

 

Additionally, the dollars we raise will be MATCHED up to $30,000 by Penn Medicine’s Orphan Disease Center (ODC).


Haven’t made your gift to advance APBD research yet? 



Click here to give

Let's make this our most impactful MDBR campaign yet! 


Thank you and best wishes,

 

The APBD Research Foundation team

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Adult Polyglucosan Body Disease Research Foundation | 2257 East 63rd Street, Brooklyn, NY 11234
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