January 2022 Newsletter
HAPPY NEW YEAR
from the
APBD Research Foundation Board of Directors

The APBD Research Foundation is pleased to announce the awarding of a $50,303 research grant to Or Kakhlon, PhD at Hadassah-Hebrew University Medical Center for the advancement of a small molecule compound with potential as a treatment for APBD. This work will focus on developing a small molecule called 088DE9 (also known as compound E). It will investigate the effect of compound E on disease progression in a mouse model that has the same glycogen branching enzyme (GBE1) mutations as in APBD. Read more...

We share new videos that raise awareness and understanding of APBD, interviews, research breakthroughs, and so much more on our YouTube channel. It's a great way to get involved with the APBD community. Watch and subscribe to our Channel... 
Meet Erin Stevens
Communications and Development Manager

APBD Research Foundation is pleased to announce the addition of Erin Stevens to our amazing part-time staff.

Erin is a Nashville, Tennessee native with 17 years of non-profit leadership experience. She has an undergraduate degree in Human Resources and an MBA in Marketing. Most recently, she was the Director for Advancement at the Mississippi School for Mathematics and Science, the Chief Public Relations Officer and Foundation Director for Shepherd's Cove Hospice, and the Founder and Executive Director of Nashville Strip Church, where she helped Metro police officers fight human trafficking. Erin and her husband, Todd, have been married for twenty-seven years and have three wonderful sons. She is excited about the future of the APBD Research Foundation and the incredible potential that lies ahead. 

The APBD Research Foundation is excited to join over 300 patient organizations, biopharmaceutical companies and healthcare industry representatives in the EveryLife Foundation’s Community Congress. The Community Congress is a strategic advisory council that connects rare disease stakeholders to work on urgent policy issues impacting the rare disease community. The Congress is comprised of five working groups that focus on public policy, regulatory processes, newborn screening and diagnostics, access to therapies, and needs of the rare disease community during the COVID-19 pandemic.

Dr. Jeff Levenson, co-president of the APBD Research Foundation, is thrilled to represent the foundation at the Community Congress and to bring the collective voice of those affected by APBD to important policy conversations. We are grateful for the EveryLife Foundation’s continued work to empower the rare disease patient community to advocate for policy that accelerates the equitable development of and access to diagnoses and treatments. Read more...
Upcoming Events
From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals so as to 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
January 13, 2022, 7:30pm ET | 4:30pm PT

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

To learn more about these events and to participate, email us at info@apbdrf.org. 
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Together, we can make a difference!

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