University of Florida and UT Southwestern Scientists Awarded 2022 Million Dollar Bike Ride Grants for APBD Research

The APBD Research Foundation is pleased to share that Matthew Gentry, PhD (University of Florida) and Berge Minassian, MD and Mayank Verma MD, PhD (UT Southwestern Medical Center) are the recipients of rare disease research grants from the University of Pennsylvania’s Million Dollar Bike Ride (MDBR) program. For the seventh consecutive year, the Foundation partnered with the University of Pennsylvania’s Orphan Disease Center to participate in the MDBR program for rare disease research. Last June, the APBD Research Foundation and the APBD Tour de Friends biking team raised $69,354 and received a maximum match from the Orphan Disease Center for $30,000 additional.

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

The APBD and GSD IV Clinical Pra ctice 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 HERE

Making a Planned Gift

The APBD Planned Giving program was launched in 2022 with a generous bequest made by Art Glassman. Art is a retired estate planning and tax attorney in Minneapolis, Minnesota. In 2001, a leading neurologist in Minneapolis told Art and his wife, “Penny doesn’t have MS; I don’t know what she has, and there is nothing more we can do." Penny was finally diagnosed with APBD in 2009 at the Mayo Clinic in Rochester, Minnesota.

Art’s love for and devotion to Penny guided his decisions with and for her during the years when APBD was so unforgiving to her. Remaining together with his life partner was paramount. They sold their home in 2012 and lived together in an assisted living facility and then a care suite until Penny’s death in 2015, six years after Penny received her APBD diagnosis. Art understands deeply the burden of this disease. Making this legacy gift to the Foundation is a tribute to Penny and every patient and family member battling APBD.

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.

SAVE THE DATE! June 10 -- Join Us for Penn Medicine's Million Dollar Bike Ride

For the eighth consecutive year, the APBD Research Foundation has been invited to participate in Penn Medicine’s Million Dollar Bike Ride for rare disease research. With this program, over $639,000 has been allocated to groundbreaking APBD research to date. You can be a part of driving APBD research forward when you ride and make a donation.

Learn more about joining our team, APBD Tour de Friends , and riding with us!

Caregiver / Family Chat

April 20, 2023, 7:30pm ET | 4:30pm PT

May 11, 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

April 26, 2023, 8:00pm ET | 5:00pm PT

May 24, 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.

Hear from our Community

"As a teenager, I watched my father — who was strong and invincible — come to terms with losing his independence as a result of APBD's ravaging effects. He would come home from work and share that he had fallen in the office and needed his coworkers to get him off the floor. Even the walk to visit his parents’ home — two blocks away from our home — became too difficult for him. Today, dad's work continues as others like myself carry the torch."

-Faye Rosenberg

Volunteer and daughter of the late Gregory Weiss (Founder, APBD Research Foundation)