This GivingTuesday, Double Your Impact!

November 28 is GivingTuesday, a global day of giving, unleashing the power of people and organizations to transform their communities and the world. It’s an opportunity for all of us in the APBD community and our networks to come together to support our #1 goal: treatments and a cure for APBD.

Thanks to a generous Board member, all donations leading up to GivingTuesday will be matched up to $10,000.

Make a Donation and

Double your Impact Now

APBD Research Foundation to Participate in the Glycogen Storage Disease Value Project

The APBD Research Foundation is excited to contribute to the Glycogen Storage Disease (GSD) Value Project. This initiative will develop an internationally applicable set of patient health outcomes that are relevant to individuals with liver GSDs and other GSD subtypes.

Defining standardized, patient-centered outcomes for GSDs is an important step towards improving the care for individuals living with all forms of GSDs. This is crucial to having patients be the direct reporters on their disease. Additionally, standardization allows for consistent international data collection, sustainable disease registries, and innovative orphan drug development.

APBD Research Foundation Expands its Scientific and Medical Advisory Board

From left to right: Jennifer Orthmann-Murphy, MD, PhD; Felix Nitschke, PhD; Matthew Gentry, PhD; and

Wyatt Yue, PhD

The APBD Foundation is excited to announce key additions to its Scientific and Medical Advisory Board (SMAB). Our SMAB members offer their expertise and guidance to our Board and staff team by bringing perspectives from foundational, clinical, and translational science and medicine.

The new additions to our SMAB include:

- Jennifer Orthmann-Murphy, MD, PhD (SMAB Co-Chair)

University of Pennsylvania

- Felix Nitschke, PhD (SMAB Co-Chair)

UT Southwestern Medical Center

- Matthew Gentry, PhD

University of Florida

- Wyatt Yue, PhD

Newcastle University

Meet Anesa Kajtazovic, the Newest Addition to our Team!

The APBD Research Foundation is delighted to introduce our newest team member, Anesa Kajtazovic, who has joined us as our part-time Community Affairs Officer.

Anesa brings with her a wealth of experience from the realms of nonprofits and governmental affairs. In her prior roles at UnityPoint Health, Family & Children’s Council, and as a member of the Iowa State Legislature, Anesa was successful in diversifying revenue streams, setting event and sponsorship fundraising records, and engaging new stakeholders.

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 Foundation leaders, and the chance to raise funds for APBD research.

Patient Chat

Dec. 13, 2023, 8pm ET | 5pm PT

Topic: APBD Genetics: Genes, Enzymes, and Research (Oh My!)

Guest Speaker: Noelle Lynch | Genetic Counseling Graduate Student, Columbia University

A special thanks to GeneDx for sponsoring this Chat event. Harriet Saxe will serve as our volunteer moderator. Questions may be directed to harriet@apbdrf.org.

Caregiver / Family Chat

Dec. 7, 2023, 7:30pm ET | 4:30pm PT

The C/F Chat is hosted by volunteer moderator Linda Cedarbaum. To learn more and get a Zoom link for the 7th, email linda@apbdrf.org.

We provide this FREE monthly newsletter resource to all patients.

This program is made possible by contributions to the APBD Research Foundation from donors like you.

Thank You!

Connect with Us

info@apbdrf.org | 646.580.5610 | apbdrf.org

Participate in Research -- Join Our Patient Registry!

Give Today to Support Your #1 Cause