Patient Chats

Since 2014, we have been bringing people impacted by APBD together, via Patient Chats, every month. While the Patient Chats have always been conversations among laypersons, we came to recognize that they could be supplemented with occasional presentations from health experts. Through 2021 and 2022, we invited specialists to provide "food for thought" and discussions on important issues impacting our patients. With patient privacy protected, we recorded these unique Chats. If you missed one of these Chats, you can still watch them on our playlist. 


On Giving Tuesday, Consider How You Can Defeat APBD! 

As 2022 soon draws to a close, it is time again to ask for your support in donations! Our work is only possible because of your involvement, contributions, and generosity. We have made strides in advancing research, but we do not yet have treatments and a cure for APBD. There's a lot to be accomplished.

This year, on November 29th, people around the world will come together and create a wave of radical generosity for GivingTuesday. GivingTuesday has become a global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity among nonprofit and philanthropic

organizations. The result: real change and solutions in communities around the world! 

We thank you for choosing to support our work to find treatments and cures for APBD on GivingTuesday!


Community Shout Out!

Our deepest appreciation goes to multimedia artist Hanniel Levenson whose work Return to the Garden is a beautiful immersion in mysticism, color, and play. Levenson contributed a portion of his art sales to the success of our mission and APBD research. Thank you, Hanniel!

It is only with the support of our amazing community members that our Foundation is able to continuously thrive! 

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

December 8, 2022,  7:30pm ET | 4:30pm PT

January 19, 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

Patient Chat

November 23, 2022, 8pm ET | 5pm PT

December 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

We welcome new participants!

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 | 646.580.5610 |

Participate in Research -- Join Our Patient Registry!

Give Today to Support Your #1 Cause

Facebook  Twitter  Youtube