We wish you and your family a joyous and peaceful Holiday Season!

Editor's Note: Oil pastel artwork created by patient Alma Hecht.

Thanks to the Hecht family for sharing this with our community.

APBD Researchers Share Backstories

We interviewed Felix Nitschke, PhD and Wyatt Yue, PhD -- two Million Dollar Bike Ride research grant recipients --  to give you a chance to get to know them and read about their groundbreaking APBD research. Read more by clicking on the links below:

Dr. Nitschke and Dr. Yue, thank you for your work in this field. We wish you and your team much success on behalf of our community!

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 a chance to hear from Foundation leaders. Our upcoming events include:



Caregiver / Family Chat

January 19, 2023, 7:30pm ET | 4:30pm PT

February 9, 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

December 28, 2022, 8pm ET | 5pm PT

January 25, 2023, 8pm ET | 5pm PT

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

We welcome new participants!

Rare Disease Day 

February 28, 2023, is Rare Disease Day...and it is just around the corner! This is a time for us to collectively raise public awareness and advocate for all individuals and families impacted by APBD and other rare diseases.

From social media campaigns to city lights events, and from media coverage to speaking with your elected officials, there's so much each of us can do. We'd love to hear from you.

Share your thoughts with us by emailing info@apbdrf.org. 

It is with heavy hearts that we acknowledge those in our community whom we lost this year. We honor these individuals' beauty, uniqueness, and contributions to our shared experiences. Our thoughts and prayers are with their family members and friends.

We’re aiming to raise $70,000 by the end of the year to pave the way for greater APBD breakthroughs in 2023. Thanks to our Board members, any gift you make between now and December 31 will be matched dollar-for-dollar up to $25,000. 

Make your gift today--and double your impact!

We hope you find this newsletter informative. If you know someone who would benefit from receiving our monthly newsletter, please ask them to join us by signing up HERE.

Connect with Us

info@apbdrf.org | 646.580.5610 | apbdrf.org

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