June Newsletter

On June 12, our Foundation had a record-breaking 89 enthusiastic and imaginative virtual riders join our Tour de Friends team for the University of Pennsylvania’s Million Dollar Bike Ride (MDBR) for rare disease research.

By the time our last virtual cyclists crossed their virtual finish line, our team had raised over $35,200 in donations. The next day we were awarded $30,000 in matching funds from UPenn and also $30,000 more from a few generous community members who had joined forces to match the UPenn award. 

This means APBD research in 2022 will go forward with at least
$95,200 to fund pilot research grants.  

There's still time to boost the number to $100,000. 
2021 is the sixth consecutive year that our community received an invitation to raise funds under the umbrella of the MDBR. Our invitation was based on a look-back at the total funds we raised in 2020 as well as on the number of Tour de Friends riders on our team in 2020. You can see, then, that each year's showing impacts the potential for our team to participate and fundraise in the following year. 

Do you wonder what happened with the funds raised in 2020? They were awarded to UT Southwestern scientist, Felix Nitschke, PhD, who is developing a novel therapeutic approach called “cross-correction-enabled amylase” for APBD. Dr. Nitschke and his team are also working on developing a better molecular level understanding of APBD and other conditions (such as Lafora disease) where insoluble glycogen accumulates and has severe neuropathological consequences.

On behalf of the APBD community, thank you for the gift of research.

Harriet Saxe
Captain, APBD Tour de Friends
APBD Research Foundation Board Member
These selfies, taken during our Tour de Friends virtual ride on June 12, were fun to collect, but also accomplish something very important. They show donors, researchers, physicians, pharmaceutical leaders, and government decision makers that the APBD community is cohesive, vital, and deserving of treatments and a cure.
From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals in an effort to build community and collaboration.

Our upcoming events include:
Caregiver/ Family Chat
July 8, 2021, 8:30pm ET | 5:30pm PT

Patient Chat
July 28, 2021, 8pm ET | 5pm PT
To learn more about these events and to participate, email us at info@apbdrf.org