APBD Research Foundation

02/03/2026

Join us for a special Patient Chat with a guest speaker on February 25th, 9am PT | 12pm ET. Lindsay Gill, PhD, Research Manager with the APBD Research Foundation, will be presenting on Why It's Important That You Participate in the GSD IV Biobank.

To learn more or register for this event, email Harriet at harriet@apbdrf.org.

02/02/2026

Join us this month as we help raise awareness for on Feb. 29th.

🌍 300 million people. One global community.

Rare diseases affect millions, yet research and funding is limited. Funding rare disease research is not only a moral imperative, it’s a smart, forward-looking investment. Discoveries in rare disease science often pave the way for treatments in cancer, neurology, and beyond, sparking progress across all of healthcare.

⚖️ Equality gives every disease the same level of funding.
💜 Equity for rare diseases means investing more where it’s needed most.

👉 Learn more about equity: https://go.rarediseaseday.org/equity

01/28/2026

For all of you, facing the winter weather and storms, in the US and abroad, stay warm and safe!

🌨️ Sweater weather!⁠
⁠
Drawing by Charles M. Schulz for "Dr. Snoopy’s Advice to Pet Owners," 1993. Collection of the Schulz Museum. © Peanuts Worldwide LLC

01/23/2026

Because of you, our 2025 Year-End Giving Campaign was an incredible success. Together, more than 120 generous supporters helped us exceed our $200,000 goal—raising $229,000 in support of our mission.

Your generosity — through donations, advocacy, shared stories, connections, and peer-to-peer efforts — fuels real momentum as we work toward making APBD treatments a reality. We’re deeply grateful for each of you and inspired by what we’ll make possible together in 2026.

Thank you for standing with us and for being such a vital part of our community. 🙏

01/21/2026

We are deeply saddened to share news of the passing of Former Board Member and Director Emeritus David Epstein.

David served for a decade during the APBD Research Foundation’s early years, helping shape the organization at a critical time. We owe a significant portion of the success of our Columbia University and NORD patient registries to his leadership, expertise, and dedication. Even after APBD required him to step back, he remained committed as a Director Emeritus.

His impact, generosity, and compassion will be felt for years to come. Our thoughts are with the Epstein family and loved ones.

01/19/2026

As you plan for 2026, we hope you'll include the APBD Research Foundation in your giving. Your generosity fuels our work!

Did you know you can easily set up a monthly recurring gift?

Whether it’s $10, $50, or $100, every dollar makes a difference. Choose a giving level that’s comfortable for you and support us throughout the year. Together, we can achieve so much!

Donate now—whether it’s a monthly gift or a one-time contribution—every bit helps: https://loom.ly/TbXw9Vk

01/15/2026

DID YOU KNOW? January is National Hobby Month! 🎉

From legos, to jigsaw puzzles, to reading…and more, we all have a few of them. What's yours?

01/13/2026

DID YOU KNOW? The APBD Research Foundation publishes a free monthly newsletter -- filled with research updates, events, and resources. Be sure to sign up by visiting apbdrf.org!

01/07/2026

Join our monthly Patient Chats and Caregiver/Family Chats, held throughout the year, to find support, share resources, and connect with others who understand. These conversations bring our community together and deepen understanding of how APBD impacts daily life because no one should navigate this journey alone.

Mark your calendars for January!

Caregiver/Family Chat
January 8, 2026 — 9:30am PT | 12:30pm ET
Hosted by volunteer moderator Linda Cedarbaum
To learn more or register: linda@apbdrf.org

Patient Chat
January 28, 2025 — 9am PT | Noon ET
Hosted by volunteer moderator Harriet Saxe
To learn more or register: harriet@apbdrf.org

We look forward to seeing you there!

01/01/2026

🎉🌟 Happy New Year! 🌟🎉

As we welcome 2026, we do so with hope, determination, and momentum. May the year ahead bring health, joy, and continued progress toward meaningful treatments for the APBD community.

Together, we are pushing research forward, strengthening support for families, and moving closer to therapeutic options for over 34,000 individuals living with APBD and related diseases. Your steadfast support makes this progress possible.

Here’s to a year of collaboration, breakthroughs, and assured progress toward treatments. Cheers to 2026! 🥂✨
#2026

12/31/2025

JUST A FEW HOURS LEFT! ✨💙✨

Only a few hours left to make a tax-deductible donation for the year-ending 2025 to the APBD Research Foundation -- and have it matched, doubling your impact.

Your support fuels life-changing work and paves the way for APBD treatments.
👉 Donate: https://loom.ly/en-gK_A

Thank you for all that you make possible for the APBD community!

12/31/2025

As 2025 draws to a close, we write to express our 🙏THANKS 🙏 to each of you -- patients, caregivers and family members, clinicians and researchers, rare disease advocates, industry partners, federal agency partners, and the incredible APBD Research Foundation Board, staff, and volunteers. Each of you are a part of this growing community that is carrying the Foundation's mission forward. Your dedication, passion, grit, generosity, and support represent the heart of everything we do to advance APBD and rare disease research.

Thank you for believing in our mission -- and for standing steadfast with us to make treatments a reality for over 34,000 individuals impacted by APBD and related GSD IV around the world.

And as we stand at the threshold of 2026, we wish you and your family a happy, healthy, and prosperous New Year!
#2026