July 2022 Newsletter

Over 140 attendees – researchers, healthcare providers, industry and non-profit partners, and individuals and family members impacted by APBD – from eight countries joined us for our APBD Scientific and Community Conference on May 11-12, 2022. This fantastic event allowed attendees to hear of progress being made in APBD and allied diseases diagnoses, clinical care, and therapeutic development. Our speakers also presented on disease prevalence, natural history, and biomarkers research studies. Throughout the Conference, we heard from people with APBD and their loved ones and caregivers whose lived experiences guided our discussions.

The APBD Research Foundation shares with deep regret the passing of board member Robert (Bob) Zuckerman on June 23, 2022.
Mr. Zuckerman served on the Foundation's Board of Directors over the last decade. He was an extraordinary human being widely known for his high-profile photographic work in the film industry and his acclaimed book, Kindsight. Robert touched so many lives in important, life-affirming ways. His generous service to our community had a great impact and will not soon be forgotten. 
Our thoughts, prayers, and support are extended to Robert Zuckerman‘s entire family during this time.

The APBD Research Foundation announced that Jennifer Orthmann-Murphy, MD, PhD has joined the Foundation’s Scientific Advisory Board. Dr. Orthmann-Murphy is Assistant Professor of Neurology and Co-Director of Age Span Fellowship in MS/Neuroinflammatory Disorders at the University of Pennsylvania. 

“We are delighted to welcome Dr. Orthmann-Murphy to our Scientific Advisory Board, and truly appreciate her passion and commitment to helping patients with undiagnosed white matter diseases get to a prompt and accurate diagnosis,” shared Harriet Saxe, a member of the Foundation’s Board of Directors. “Her many strengths will augment our efforts to address the diagnostic challenges faced by our community, enhance patient care, and move us forward in finding treatments and a cure for this debilitating, ultra-rare disease.” Read more...
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
August 11 and September 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
July 27 and August 24, 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 happily welcome new participants!

Have you considered making a special gift in honoror in memory, of a loved one on special occasions while also supporting your #1 cause? These occasions could include: weddings, birthdays, bar/bat mitzvahsand anniversaries, to name a few

Making a tribute/memorial gift to APBD Research Foundation enables you to recognize the special people in the our community who inspire you and make the APBD fight a little easier while also supporting critical research and awareness-building programs that our community greatly needs.

Take this opportunity to recognize and thank those in the APBD community—patients, caregivers, friends, family members, health care providers, and researchers—who make a difference in the fight against APBD. We will acknowledge your gift by sending a card to the honoree or family member on your behalf. The card will specify the occasion, the person honored, your name, and message.
Will you commit to making a gift in honor of or in memory of someone special? Visit our giving page here...
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