We Need You for the 2024 Million Dollar Bike Ride

For the ninth consecutive year, the APBD Research Foundation is participating in the University of Pennsylvania’s Million Dollar Bike Ride, raising funds for APBD research. The ride takes place in Philadelphia on June 8.

This collaboration presents a significant chance to advance APBD research. We need your support to make this our most impactful year yet! There are several ways to throw your weight behind our team’s efforts.

Become a Virtual Rider or In-Person Rider
Give to Advance Research

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

We need to have 15 people on the ground in Philadelphia, either as a cyclist, a roller/walker, or as a volunteer. If you are in the greater Philly area and are interested in participating, email us.

Questions? Please contact team co-captains Anesa at anesa@apbdrf.org or Harriet at harriet@apbdrf.org

Remember! Virtual riding, in-person riding, or making a donation, your actions matter. And don't forget to share with a friend!

Research Highlight

A US-Based Patient-Reported APBD Registry: Initial Results

Researchers at Columbia University have published findings from the Columbia APBD Patient/Family (CAP) Registry in the scientific journal, Therapeutic Advances in Rare Disease. The findings describe the demographics and the course of APBD using survey responses from ninety-six individuals with the condition.  


APBD Featured in New Book, Kaleidoscope: Rare Disease Stories

We are excited to share that Sarah Williams’ APBD journey is featured in the newly published book, Kaleidoscope: Rare Disease Stories, by Kerry Wong. 

The stories featured in this book are firsthand narratives from individuals across the globe, each shedding light on the challenges and triumphs of living with a rare disease.

Read Sarah's journey here...

APBD in the News

The Times of Israel recently featured an article that puts the spotlight on APBD. It describes the work of researchers in Israel who have discovered a molecule, GHF-201, that shows promise in breaking down the harmful substances causing APBD.

Read the article..

Editor's Note: Investing in Dr. Or Kakhlon’s research and the development of GHF-201 over the years is an achievement for the APBD community. Moreover, what we make possible for APBD patients has potential implications for patients with allied diseases.

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 Foundation leaders, and the chance to raise funds for APBD research.

Patient Chats

April 24, 5pm PT | 8pm ET

Topic: Speech and Swallowing Disorders in APBD

Guest Speaker: Harrison Jones, PhD | Duke University School of Medicine

Register for free: click here

May 22, 2024, 8pm ET | 5pm PT

This Chat is hosted by volunteer moderator Harriet Saxe. To learn more, email Harriet at harriet@apbdrf.org.

Caregiver / Family Chats

April 11, 2024 7:30pm ET | 4:30pm PT

May 16, 2024 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 linda@apbdrf.org.

Make a Legacy Gift to Fight APBD

Have you considered the lasting impact you can have on the APBD Research Foundation’s mission? 

Beth and Jeff Katz's journey with APBD has inspired them to plan for their future. “As a family, we've decided to leave a legacy of hope by including the APBD Research Foundation in our estate planning. By doing so, we're not just securing our own peace of mind, but we're also investing in a brighter tomorrow for all those affected by this condition. Our journey with APBD has shown us the power of community, and we're proud to be a part of the quest for a cure."


Make a lasting impact - now and beyond your lifetime...

 Please note that FreeWill is not a law firm and cannot provide legal advice, nor can the APBDRF. We would always encourage that a lawyer review your will and any other important legal documents FreeWill may generate for you.

To learn more, contact Anesa Kajtazovic (our Foundation's Community Affairs Officer) at anesa@apbdrf.org.

We provide this FREE monthly newsletter resource to all of our community members.

This program is made possible by contributions to the APBD Research Foundation from donors like you.

Thank You!

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