May 2022 Newsletter

The APBD Research Foundation hosted its first virtual Scientific & Community Conference on May 11-12. The Conference was a fantastic event that brought together researchers, health care providers, industry and non-profit partners, and individuals and family members impacted by APBD and allied diseases.
During the Conference, we heard of progress being made in APBD and allied diseases diagnoses, clinical care, and therapeutic development. Our speakers also presented on disease prevalence, natural history, and biomarkers research studies. Throughout the Conference, we heard from people with APBD and their loved ones and caregivers whose lived experiences guided our discussions.
View co-president Jeff Levenson’s welcome remarks on our YouTube channel. Stay tuned for additional conference recordings!

Join our virtual APBD Tour de Friends Team as we cycle for the 7th time in the Million Dollar Bike Ride for rare disease research. 

How can you participate right now?

Go HERE to register for free as a "virtual cyclist" with the APBD Tour de Friends, and go HERE to donate to APBD research.

Every dollar raised will be MATCHED by Penn Medicine's Orphan Disease Center (ODC) up to $30,000, AND generous community supporters will match the ODC match. EVERY dollar you donate can generate $3.00 in research for APBD!
Upcoming Events
From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals which connect our community members and deepen the understanding of how APBD impacts lives. 

These events offer peer support, opportunities to hear from health experts, and a chance to hear from Foundation leaders. Our upcoming events include:
Caregiver / Family Chat
June 9, 2022, 7:30pm ET | 4:30pm PT

This chat is hosted by volunteer moderator, Linda Cedarbaum. To learn more and register for this event, email Linda at

Patient Chat
May 26, 2022, 8pm ET | 5pm PT

This chat is hosted by volunteer moderator, Harriet Saxe. To learn more and register for this event, email Harriet at

We happily welcome new chat group participants!
We hope you find this newsletter informative. If you know someone who would benefit from receiving our monthly newsletter, please ask them to join us by signing up HERE.