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News & updates

Follow the progress being made across the PMD and PMLD community, including research developments, awareness initiatives, partnerships, events, and stories from families and advocates around the world. 

Musa’s Family Story

April 27, 2026

When I imagined the future of our little family, I pictured scraped knees, football games, graduations, and first dates. A life defined by a medical...

Q3 Treasurer’s Report

November 3, 2025

A big thank you to the PMD community, as we continue to make strides in 2025! We have raised almost $38,000 in the first 9...

Q2 Treasurer’s Report: Starting Strong, Thanks to You!

July 24, 2025

A big thank you to the PMD community as 2025 is off to a good start from a fundraising perspective! We have raised almost $14,000...

Q1 Treasurer’s Report: 2025 Off To a Strong Start

April 15, 2025

A big thank you to the PMD community as 2025 is off to a great start from a fundraising perspective! We have raised almost $12,000...

2024 Treasurer’s Report

February 13, 2025

A big thank you to the PMD community as 2024 marked another strong year from a fundraising perspective! We raised almost $80,000 for the year...

2025 Grant Announcement

February 13, 2025

The PMD Foundation is excited to share a new grant that will support brain organoid research at Case Western Reserve University School of Medicine, led...

Important Communication Regarding Sana Biotechnology CNS Program

November 26, 2024

On Nov 4, 2024, Sana announced that they would be scaling back their Neurology program to reprioritize the resources within their pipeline. This cut includes...

PMD Foundation Remains on Solid Ground through 2024

November 18, 2024

Every September we celebrate Leukodystrophy month with our Run, Walk, or Roll event. Our Warrior Teams raise funds for research and awareness for all of...

PMD Foundation in Strong Financial Health

July 12, 2024

A big thank you to the PMD community as we are off to another strong start to the year from a fundraising perspective! We raised...

Ionis Pharmaceuticals Announces Clinical Study

April 22, 2024

Ionis Pharmaceuticals has announced the ORBIT Study to evaluate the safety, pharmacokinetics, and pharmacodynamics of intrathecally administered ION356 in participants with Pelizaeus Merzbacher Disease (PMD).

Q1 Treasurer’s Report: 2024 Off to a Strong Start

April 17, 2024

A big thank you to the PMD community as we are off to another strong start to the year from a fundraising perspective!

Pelizaeus-Merzbacher Disease Patient-led Listening Session

March 27, 2024

On August 22, 2023, six PMD families from across the country, and Dr. Adeline Vanderver, MD, Children’s Hospital of Philadelphia (CHOP), met with the US...
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