June 2022 Newsletter
Highlights from the
2022 Million Dollar Bike Ride

On June 11th, we rallied our community for Penn Medicine's 2022 Million Dollar Bike Ride for the seventh consecutive year ... and what a turnout we had!

We can take pride:
 
- 104 registered cyclists joined the APBD Tour de Friends virtual team (our largest group yet)

- Beth Katz sported our unique Helmet of Honor on behalf of the entire team. Her husband, Jeff, was diagnosed with APBD in 2015. She shared, "I have participated every year that I could. I think it’s just a great fundraiser because you can easily introduce it to your family and friends. And especially now that you can be a virtual rider, I just send a mass email. I don’t even know who signs up because of me."

- To date, we have raised $98,614.00. Will you help us cross the $100,000 threshold for research? Click here to give now...

This slide show will put a smile on your face!

APBD is a complex, multi-system condition. Diagnosis can be quite difficult, resulting in a long and challenging diagnostic journey for patients. Further, because it's an ultra-rare disorder, most physicians have never seen a patient with APBD.  
 
For all those reasons, we're excited to share this directory of healthcare providers who have helped with diagnosis and/or care of individuals with APBD in our community.

If you have APBD or are a caregiver of someone diagnosed with APBD, and you would like to see your healthcare provider included in this directory, please share your provider's contact information and we will reach out to see if he/she would like to be included in the directory. Please email your suggestions to info@apbdrf.org. 
 
If you're a physician who cares for individuals with APBD, and you'd like to be included in this directory, we want to hear from you! Please email us at info@apbdrf.org. 
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
July 14
August 11, 2022, 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
June 30
July 28, 2022, 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 happily welcome new participants!
Photo of the Month: CZI Rare As One Cohorts Gather in San Diego

APBD Research Foundation representatives -- Deberah Goldman, PhD, Harriet Saxe, Natacha Pires, and scientific advisor Orhan Akman, PhD -- joined the CZI Rare As One community for CZI's RAO Conference in San Diego on June 5-8, 2022. It was a wonderful opportunity to hear from and connect with our peer RAO grantees, researchers, and clinicians about the incredible work in finding treatments and cures for rare diseases!
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.