October 2022 Newsletter

A Patient's Story: Sarah

One of the highlights of our May APBD Scientific & Community Conference was Sarah's description of her life with APBD. The practical insights she offered to people who've been recently diagnosed with APBD are both real and relevant.

Take a moment to watch Sarah and others share their experiences...  

Giving Tuesday: Save the Date!

In the coming weeks, we'll be gearing up to raise critical funds to support our 2023 initiatives. Giving Tuesday, on November 29, will be our launching pad! Stay tuned for exciting updates and unique opportunities to support our work.

Meet Camille Keene!

We are pleased to introduce you to Camille Keene, the newest addition to our team. We partnered with Second Day to find Camille, who is studying Political Science at Howard University. Camille will help us develop communications that support our efforts to grow our programs and make treatments and a cure a reality. Read more hereā€¦

Upcoming Rare Disease Conference

You may find this upcoming scientific conference beneficial and informative:

Date: October 20, 2022

Hosted by: Association for Glycogen Storage Disease

Click here for more details and to register.  

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

November 10, 2022, 7:30pm ET | 4:30pm PT

December 8, 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

October 26, 2022, 8pm ET | 5pm PT

November 23, 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 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.

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