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 $70,000, 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.

In 2022, we made significant advances, with patients’ needs in mind:

We also:

Hosted 24 Patient and Caregiver Chats, serving as a lifeline of support for patients and family members in need of connection, resources, and answers;

Determined the global prevalence of APBD and other GBE1 diseases in partnership with the Rare Genomes Project;

Capped our groundbreaking 2021 Listening Session with the FDA with a published summary that put APBD on the radar of federal agencies; … and more!

Over the past three years, we received two generous Rare As One grants from the Chan Zuckerberg Initiative (CZI). With the grant cycle coming to an end, your donation matters more than ever. We look to you – individuals, corporations, and foundations – to help us raise the funds needed to sustain and build from our recent successes.

Between now and December 31, 2022, we must raise $70,000. Thanks to the generosity of anonymous donors, your gift will be matched dollar-for-dollar up to $25,000. This year-end fundraising campaign will ensure we start 2023 strong and support the programs you and so many others rely on. As hard as we work, we need the continued support and commitment of our community to meet the match, reach our $70,000 goal, and succeed in our mission.

Please keep us fighting and being a beacon of hope.

Help us reach our goal of raising $70,000 by Dec. 31, 2022.

We cannot do it alone. Make your year-end donation today!

Looking forward, with hope, to 2023, we find ourselves positioned for breakthroughs with clinical trials, guidelines for clinical care, patient-driven programs, and so much more – all of which has been years in the making. Your support now fuels our quest for treatments and a cure for APBD.

We extend our warmest gratitude once again for your exceptional contributions to our mission-driven programs.

APBD Research Foundation End of Year Campaign

Team Members