Your support has helped us achieve so much:
The APBD Research Foundation advocates for patients’ unmet needs; develops supportive and collaborative networks of health professionals, researchers, and patients; and funds research.
As we approach year-end 2022, we aim to raise $50,000, with your help, to ensure we start 2023 strong. But without it, we risk cutting critical APBD programs. As we look back on the past year, we are so thankful for the steadfast support of our community members and donors like you. Our work is only possible because of your involvement, contributions, and generosity. We have come a long way and there is still so much more to accomplish.
Since its founding in 2005, the APBD Research Foundation was – and continues to be – the only patient advocacy and research organization dedicated to finding treatment options and a cure for this ultra-rare, neurodegenerative condition.
Your donation makes a difference!
Here’s a look at three major accomplishments from 2022:
We raised $99,354 for critical research through UPenn’s Million Dollar Bike Ride
in collaboration with the Association for Glycogen Storage Diseases
We held international APBD Scientific and Community Conference which brought together over 140 attendees – scientists, clinicians, federal agency representatives, industry partners, patients, and family members
Hear from our supporters
“I received the APBD diagnosis in 2014, after eight years of misdiagnoses. Within two weeks of getting diagnosed, I got involved with the APBD Research Foundation. Over the years, I have witnessed the loss, one by one, of several members of this community. Yet, I have hopes and aspirations to see my two children who are in their 20s, get married, flourish in their careers, and have children. I want to spare future generations from the horrible consequences of APBD and remain hopeful that the scientists and researchers are on the cusp of finding a treatment and a cure in my lifetime.”
– Deberah Goldman, PhD | APBD Research Foundation’s Board of Directors