We are thrilled to share that we raised $68,000, thanks to the generosity of 75 supporters, during our year-end fundraising campaign. Because a few year-end gifts are still coming in, we are keeping the campaign page active through the end of January.

If you'd like to make a gift, you can do so here. Thank you for helping us start 2023 strong -- YOU made this possible!


Bruce Rosky Shares His Approach to Caregiving on KevinMD.com

We are excited to share that Bruce Rosky’s narrative on his approach to caregiving for his wife and hero, Jennifer, who was diagnosed with APBD in 2016, was published on KevinMD.com. The write-up also sheds light on the fact that APBD is an ultra-rare neurogenetic condition, and it continues to be misdiagnosed and under-recognized.


Editor’s Note: Our thanks to Bruce and Jennifer for sharing their experiences! We appreciate Dr. Kevin Pho, host of KevinMD.com for publishing this story. The KevinMD.com platform receives over 3 million monthly page views, with over 250,000 followers on Twitter and Facebook. A shout-out and thanks to Camille Keene, our SecondDay Fellow, for drawing out this powerful narrative with Bruce.

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

February 9, 2023, 7:30pm ET | 4:30pm PT

March 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

January 25, 2023, 8:00pm ET | 5:00pm PT

February 22, 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.

RARE Disease Day -- Come and Show Your Stripes!

February 28, 2023

You're invited to join our awareness-building efforts throughout the month of February, leading up to RARE Disease Day on February 28. Patients and their family members will 'show their stripes' as they proclaim the need for treatments and a cure. From articles in the media to social media campaigns, and more, we're taking APBD to the masses. Write to harriet@apbdrf.org to receive a special wearable accessory in recognition of RARE Disease Day!


Did you know that we are now on Instagram?

Here's one more way to receive the latest updates on APBD and raise awareness!


Connect with Us

info@apbdrf.org | 646.580.5610 | apbdrf.org

Participate in Research -- Join Our Patient Registry!

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