We Need You for the 2023 Million Dollar Bike Ride

For the eighth consecutive year, the APBD Research Foundation has been invited to participate in the University of Pennsylvania’s Million Dollar Bike Ride for rare disease research, on Saturday June 10th, 2023.

Over the years, we have raised $639,000 to support groundbreaking APBD research led by researchers at Columbia University, Duke University, Hadassah Medical Organization, UT Southwestern Medical Center, Newcastle University, and the University of Florida.

We need your support to make this our most impactful year yet!

RIDE. DONATE. SHARE.

Gifts are matched -- tripling your impact! The dollars we raise through the MDBR will be MATCHED by Penn Medicine's Orphan Disease Center (ODC), up to $30,000. In addition, generous community supporters will match the ODC contribution. Every dollar you donate becomes $3 in life-changing research. The community supporter match ends May 10th, so donate now.

ODC banks all funds on our behalf and administers research grants to top researchers around the world. This is a powerful opportunity to advance APBD research. Please be generous with your support.

We need to have 15 people on the ground in Philadelphia, as a cyclist or an event volunteer, at this year’s event. Are you in the greater Philly area? We want to hear from you. Contact harriet@apbdrf.org. Remember: virtual or in-person, your support matters. And don't forget to share with a friend!

Upcoming Events

From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals which connect our community members and deepen the understanding of how APBD impacts lives.

These events offer peer support, opportunities to hear from health experts and Foundation leaders, and the chance to raise funds for APBD research.

Caregiver / Family Chat

May 11, 2023, 7:30pm ET | 4:30pm PT

June 8, 2023, 7:30pm ET | 4:30pm PT

This Chat is hosted by volunteer moderator Linda Cedarbaum. To learn more and register for this event, email Linda at linda@apbdrf.org.

Patient Chat

May 24, 2023, 8:00pm ET | 5:00pm PT

June 28, 2023, 8:00pm ET | 5:00pm PT

This Chat is hosted by volunteer moderator Harriet Saxe. To learn more and register for this event, email Harriet at info@apbdrf.org.

AGSD 2023 Conference

June 23-25, 2023

Orlando, Florida

Hosted by: Association for Glycogen Storage Disease

Click here for more details and to register.

Access the APBD and GSD IV Clinical Practice Guideline On the Go!

The APBD and GSD IV Clinical Practice Guideline is an important resource for you and your healthcare team. We have developed a card, with a QR code, that when scanned with your phone, takes you to the website featuring the Guideline in its entirety.

You can download and print your copy or you can order cards for yourself and your healthcare team. Keep the cards in your wallet and car, so you have access to them whenever you see your doctor. Be sure to also share the cards with as many of your health care team members as possible!

ORDER YOUR CARDS

Hear from our Community

“My mother Sylvie Zielinski was diagnosed with APBD in 2019. She lives in Paris and does not know of patients like her in France.

I live in Israel and I’m thankful to have found the APBD Research Foundation that cares and connects patients. APBD can be isolating and lonely. Now, she can finally share her experiences with people who understand her. We need more of this.”

– Julie Elkaim