August 2021 Newsletter


2020 was an unprecedented year, filled with change and uncertainty. It also marked the Foundation’s 15 years of progress milestone. This Annual Report highlights the scope of activities and achievements that gives us much hope for the future. 


We're also excited to share that the new cycle for the Million Dollar Bike Ride Pilot Grant Program is open and we're looking forward to hearing from our researchers. Additionally, this newsletter includes our upcoming Patient and Caregiver Chat events, a feature article in Tablet Magazine that profiles the APBD community...and much more!

Our work is only possible because of you. Thank you for your steadfast support!

Best wishes,

Jeff Levenson, Co-President
and
Emil Weiss, Co-President
We're pleased to announce the opportunity of one $99,025 grant or two $49,513 grants through the University of Pennsylvania's Orphan Disease Center Million Dollar Bike Ride Pilot Grant Program. For six consecutive years, the APBD Research Foundation has partnered with the University of Pennsylvania's Million Dollar Bike Ride program to support groundbreaking APBD and rare disease research.

The primary focus for this year's grant opportunity is the development of biomarkers for APBD. Investigations related to the development of therapeutic approaches for APBD will also be considered. The Letter of Interest (LOI) is due no later than Thursday, September 16, 2021, by 8pm EST. Click here to read more and to apply...
APBD in the News
Sara Toth Stub, a Jerusalem-based American journalist, writes about the role of patients and families in fighting rare diseases. In this feature article, she puts the spotlight on APBD and several other rare disease communities. Read more...
Feigy W. Rosenberg, daughter of the late Gregory Weiss, who founded the APBD Research Foundation, writes about APBD by reflecting on her childhood.

In this second in a series of articles, Feigy writes, "I was an only child entering my teenage years when I learned that my father had APBD. Watching my father struggle with this crippling disease filled me with worry and sadness. We were very close, and I cared deeply about him." Read more...
Upcoming Events
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.

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
Sept. 9, 2021, 7:30pm ET | 4:30pm PT

Patient Chat: "Bladder Issues and APBD" Q&A with Dr. Melissa Reigle
Sept. 22, 2021, 8pm ET | 5pm PT

 To learn more about these events and to participate, email us at info@apbdrf.org. 
We’re looking to hire a passionate and experienced Communications and Development Manager to join our small team during this crucial period of growth in our community. This is a part-time, remote position. Click here to read more and apply...