APBD Research Foundation

06/23/2026

⏳ Only 1 week left!

Have you donated to APBD research yet? Have you shared our campaign with your friends and family?

If not, now is the time.

Every donation helps fund research, accelerate progress toward treatments, and bring hope to families affected by APBD.

Help us finish strong: https://loom.ly/GVfLNPo

06/23/2026

Have you registered for our Game Night? Only a few hours left to register. We hope to see you tonight at 8pm ET.

🎉 Have you registered for APBDRF's Virtual Community Gathering?

Only one week to go! Join us on June 23 from 8–9 PM ET for a FREE evening of trivia, games, prizes, and fun as we celebrate another successful Rally for Research campaign and connect with our amazing community.

🎲 Trivia, games, and prizes
💻 Free virtual event
💜 Friends and family are welcome
🎉 A chance to connect, laugh, and have fun together

Registration is required, and space is limited to 100 participants.

Register today: https://loom.ly/wzoyf3A

06/21/2026

This , we celebrate the dads, grandfathers, and father figures in our lives and throughout the community whose love, strength, and support make a lasting difference. 💙

To the fathers who inspire us, care for us, and stand by their families through life's challenges – today we honor you.

🌻 Happy Father's Day! 🌻

Read "A Daughter's Perspective on APBD" and other personal stories from our community: https://loom.ly/K284NM0

06/18/2026

💜 Thanks to the generosity of our community during last year's Rally for Research campaign, the APBD Research Foundation recently funded three pilot research grants:

- Gene Therapy to Treat the Neurophenotype of Glycogen Storage Disease Type IV | Dr. Rebecca Koch - Duke University

- Preclinical Validation and Biomarkers in APBD of a GYS1-ASO Currently in Phase 1 Clinical Trial for Lafora Disease | Dr. Mayank Verma - UTSW Medical Center

- New Biomarkers for APBD | Dr. Gal Bitan and Dr. Brent Fogel - UCLA

Read about each of these research initiatives by visiting: apbdrf.org/research-highlights/research-grant-announcement

06/17/2026

📢 PLEASE SHARE!

Help us and connect people living with Glycogen Storage Disease Type IV (GSD IV), including both childhood and adult-onset forms.

While only about 346 people have been diagnosed worldwide, researchers believe more than 34,000 people may actually be living with GSD IV. Many remain undiagnosed, misdiagnosed, or unaware that there are others, like them, who are working to make treatments a reality.

By spreading the word, you can help connect patients, families, and healthcare professionals while moving research and treatment development forward.

👉 https://loom.ly/_oG19TM

06/16/2026

🚨 Only 10 Days Left to Double Your Impact! 🚨

There’s never been a more exciting time to support APBD research.

Thanks to the generosity of Dr. Ora Gordon, every donation to our 2026 APBD Tour de Friends Rally for Research Campaign will be matched dollar for dollar, up to $20,000, through June 26.

Your gift will go twice as far to help advance research, prepare for clinical trials, and move us closer to treatments for APBD.

💜 Double your impact.
💜 Accelerate research.
💜 Help bring hope to APBD families.

Donate: https://loom.ly/GVfLNPo

06/15/2026

🎉 Have you registered for APBDRF's Virtual Community Gathering?

Only one week to go! Join us on June 23 from 8–9 PM ET for a FREE evening of trivia, games, prizes, and fun as we celebrate another successful Rally for Research campaign and connect with our amazing community.

🎲 Trivia, games, and prizes
💻 Free virtual event
💜 Friends and family are welcome
🎉 A chance to connect, laugh, and have fun together

Registration is required, and space is limited to 100 participants.

Register today: https://loom.ly/wzoyf3A

06/04/2026

In Case You Missed It! Here’s our May newsletter: https://loom.ly/ftj4E1I

Check out what’s inside:
- 2025 Rally for Research grants awarded to UTSW Medical Center and Duke University researchers
- What is the Find The 34,000 campaign?
- Second match challenge to boost our 2026 Rally for Research fundraiser
- Upcoming Patient Chats, Caregiver and Family Chats, Game Night, and more
- Making an impact with a legacy gift

05/29/2026

🎉 Save the Date -- June 23 | APBDRF's Virtual Community Gathering! 🎉

Join us on June 23 (8-9pm ET) for our second Virtual Game Night as we celebrate the successful completion of our Rally for Research Fundraising Campaign. Come to connect as a community and enjoy the games that Digital Dov is lining up for us!

🎲 Free to attend
💻 Virtual event
🎉 Trivia, prizes, and more

💜 Friends and family welcome

Registration is required: https://loom.ly/b5KRiJU