APBD Research Foundation Appoints its First Executive Director

Dear APBD community,

On behalf of the Board of Directors, we are delighted to announce Natacha Pires as the APBD Research Foundation’s first executive director.

Natacha brings over 15 years of nonprofit/business management, communications, and development experience along with significant patient and community engagement expertise. In her prior roles at the Neuropathy Association, Dysautonomia International, and the Children’s Cancer & Blood Foundation, she was instrumental in making these organizations' missions relatable to all audiences and building strategic and scalable partnerships.

Throughout her career, Natacha has focused on strengthening connections between the medical, research, and patient communities by bringing the patients’ perspective into every facet of healthcare and research discussions.

As executive director, she will lead the organization and provide active management of the Foundation’s business under the direction of the Board of Directors. This includes leading the organization toward achievement of its mission and working with the Board to develop and implement a plan for long-term financial viability, growth, and stability.

“I am privileged and excited to build on the existing strengths of the Foundation, at the heart of which are our patients,” Natacha said. “I look forward to working with each of you—patients, family members and friends, clinicians, researchers, industry partners, allied disease partners, and policymakers—to purposefully bring forth APBD treatments and a cure. Your voices and your actions, through the Foundation, are crucial as we forge ahead.”

With Natacha at the helm and building on our rich history and work since our founding in 2005, we are well-positioned for clinical trials. We realize there is much to do as we enter this next phase of growth and development.

Natacha’s appointment represents our commitment to strategically grow the Foundation, strengthen and expand our reach and impact, and address the evolving needs of our patient community. Please join us in welcoming Natacha and wishing her every success.

Sincerely,

Jeff Levenson, Co-President

and

Emil Weiss, Co-President

JUST PUBLISHED:

Clinical Practice Guideline for APBD and GSD IV Disease

The APBD Research Foundation and the Association for Glycogen Storage Disease are excited to announce the publication of “Diagnosis and Management of Glycogen Storage Disease Type IV, Including Adult Polyglucosan Body Disease: A Clinical Practice Resource” in the scientific journal, Molecular Genetics and Metabolism. The Guideline serves as a tool for health professionals and individuals impacted by APBD and related GSD IV diseases. It aims to facilitate more prompt and accurate diagnoses and optimized care. Additionally, it identifies gaps in scientific knowledge and offers recommendations for future research.

A Mother's Perspective on APBD

After my first grandchild was born, my daughter and I were sitting in her living room one afternoon when she asked me, “Mom, when do you stop worrying about them?” My answer, unsurprisingly, was, “Never.” What is there to say about being the mother of not one, but two, adult children with APBD? Obviously, it sucks. Two brilliant, kind, loving, giving, thoughtful, generous, funny human beings misdiagnosed for years. Two people who face diminishing quality of a shortened life.

MAKE YOUR RECURRING GIFT TODAY

Join the APBDRF's

Circle of Sustainers

Your choice to become a recurring donor has a significant impact on our ability to change the lives of people with APBD. We are making remarkable progress in the journey to conquer this rare disease. With your support we will continue to invest in research that gets us closer to a cure while creating a supportive space for those impacted.

No matter the size, your recurring gift makes a difference! Please call 646.580.5610 or email us at info@apdbrf.org with any questions. You can also set up your online gift here.

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 insights from Foundation leaders. Our upcoming events include:

Caregiver / Family Chat

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

April 20, 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

March 22, 2023, 8:00pm ET | 5:00pm PT

April 26, 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.