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 the SC379 glial progenitor cell program that was approaching the start of a Phase 1 clinical trial with some focus as a potential therapy for PMD patients.
Read MoreEvery September we celebrate Leukodystrophy month with our Run, Walk, or Roll event. Our Warrior Teams raise funds for research and awareness for all of our PMD families. Every mile is in honor of someone who has been affected by PMD or PMLD.
Read MoreA big thank you to the PMD community as we are off to another strong start to the year from a fundraising perspective!
We raised over $22,000 in the first half of 2024 and look forward to another successful Run, Walk, or Roll to add to this total.
Read MoreSubmitted by Ashley’s mother, Megan:
Ashley was born after a normal pregnancy in July 2014. We started noticing nystagmus around 4 months and, after seeing an ophthalmologist, Ashley had a brain MRI at 6 months. The scan found spots, but we weren’t given a diagnosis.
Read MoreA big thank you to the PMD community as we are off to another strong start to the year from a fundraising perspective!
Read MoreSubmitted by River’s dad. Storm:
River has gone through two very distinct journeys in his young life so far. First, after 36 hours of labor River was born with Hypoxic Ischemic Encephalopathy and a subgaleal hemorrhage. After a perfectly normal pregnancy, we were told on day one that it could be River’s last.
Read MoreSubmitted by Glib’s mother, Larysa:
Glib was born in 2017. We began to have serious concerns for his health when, at 2.5 months, he had trouble holding his head up, was generally lethargic, was slow to gain weight, and developed stridor and nystagmus.
Read MoreOn 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 Food and Drug Administration (FDA) for a closed session listening session.
Read MoreJanuary 2024 – The Board of Directors of the PMD Foundation is pleased to announce the transition for the role of Board Chair. Storm Greenway is stepping into the role, following in the footsteps of Dave Manley, who served on the PMD Foundation Board for 20 years.
Read MoreThe door was closed and latched. Tom* had to back up to pull it open. There was a huge noise and he started screaming. His grandmother found him still in his wheelchair, crumpled at the bottom of the stairs.
Read MoreA big thank you to the PMD community as we finished another successful year!
We raised just under $75,000 in 2023, crossing the finish line with $56K from our Run, Walk, or Roll fundraiser in September and $18K from general fundraising and Giving Tuesday.
Read MoreTiara was born in February 2023 and, despite some concerns during my pregnancy about her size, she arrived via normal delivery. She was a beautiful baby and everything seemed fine.
Read MoreEvent organizers had full confidence in the PMD Warrior teams when they increased this year’s Run, Walk or Roll fundraising goal from $50,000 to $75,000, up from $50,000 in 2022. PMD Warrior Teams crossed the finish line with $56,201 raised from sponsorships, registrations, donations, and t-shirt sales.
Read MoreHi, My name is Angi and I am mom to my son, Brant, now four years old, who is the center of my universe. He is fiercely loved by my husband and I, his older sisters, and everyone who is uniquely blessed to know him. He is a sufferer of Pelizaeus-Merzbacher Disease.
Read MoreMy name is Robert and I live in Franklin Square, New York with my family. My wife Kristen and I have four sons; Brian (27) Trevor (25), Andrew (22), and Dylan (20). All of them are currently living at home.
Read MoreMy name is Jeff and my second child (Jack) was born 7 ½ pounds and 20 inches long in March 2000 through a full-term, normal pregnancy and delivery. The moment he was born Jack let out…
Read MoreMy name is Carlos Labrada and my son Leonardo Xavier was born on February 8, 2013 in San Diego CA. Our youngest of three children. From the moments we first laid eyes on him, we were in love.
Read MoreJames was born in September of 1989. At about four or five months of age, his childcare provider expressed concerns about his not moving around in an age appropriate way. We took him to the pediatrician, who said..
Read MoreHello, my name is Dave and this is my son Jaden. We live in Mexico, NY. Jaden is 21 years old and we received his diagnosis of Classic Pelizaeus-Merzbacher Disease when he was only 18 months old.
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