February 2022 Newsletter

The APBD Research Foundation is pleased to share that researcher Wyatt Yue, PhD at Newcastle University in the U.K. is the recipient of a $99,025 grant from the University of Pennsylvania’s Million Dollar Bike Ride (MDBR) program. Read more...

The APBD Research Foundation is honored to receive a third year of funding from the Chan Zuckerberg Initiative (CZI), this time in the amount of $150,000. The grant supports the expansion of the APBD research network and accelerates our work to find treatments or a cure for APBD and allied disorders. Read more...
Amazing AMI!

One of the Foundation's recent awareness-building initiatives was a full-page color ad on APBD placed in the popular Jewish monthly publication of Ami Magazine on January 12th. The same ad was also featured later in the month in a special periodical entitled Ami Living. As 66% of Ami readers are between the ages of 18 and 45, this ad reached a relatively untapped demographic. Since the ad was published not even a month ago, we have seen newsletter sign-ups increase dramatically!
“Shine a Light” on APBD on Rare Disease Day

The countdown has begun to Rare Disease Day 2022, which will be observed on February 28 around the world through 66 national alliances. It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally! The National Organization for Rare Diseases (NORD), of which the APBD Research Foundation is a member, is the official US partner for Rare Disease Day. Visit the website, rarediseaseday.org for all of the events and materials produced for this special day.
 
Rare Disease Day is a time for our community to come together in a collective display of support for raising awareness and improving the lives of all individuals and families impacted by rare disease, including APBD.
 
Our theme for this year’s Rare Disease Day is Shine a Light on APBD. Whether you are a patient, family member or friend, you can help illuminate APBD by emailing us a photo of yourself shining a light with a candle, flashlight or your phone (see sample photos of Erin, our Communications and Development Mgr). Along with your photo, if you would like to submit a quote about APBD that would help increase understanding of the disease, that would be great too! The photos and quotes will be compiled into a video montage and distributed widely with information on APBD through social media. Email your photo to Erin Stevens at ErinS@apbdrf.org by February 20th.
 
Stay tuned to learn about all of the other awareness and advocacy-building initiatives the Foundation is participating in on Rare Disease Day, which will be posted on our website and shared later this month.
Upcoming Events
From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals so as to to build community and collaboration.

These events offer peer support, opportunities to hear from health experts, and a chance to hear from Foundation leaders. Our upcoming events include:
 
Caregiver / Family Chat
Feb. 10, 2022, 7:30pm ET | 4:30pm PT

"Rare Disease Awareness Special" Patient Chat
Feb. 23, 2022, 8pm ET | 5pm PT
We're thrilled to have Dr. Clyde Partin (Emory University School of Medicine) join us as a special guest. Dr. Partin is recognized as an expert in rare and undiagnosed diseases. To register, click here...

Save the date:
2022 APBD Scientific and Community Conference
May 11-12, 2022 | Virtual event | ~10am-4pm ET
Stay tuned for more information...

To learn more about these events and to participate, email us at info@apbdrf.org. 
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Together, we can make a difference!

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