2024 Treasurer’s Report

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 putting us ahead of the $75,000 we raised in 2023. A big part of our success this year was a $20,000 donation from Ionis Pharmaceuticals we received in September.

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BlogMaureen Ballatori
The DeMartini Family Story

Submitted 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.

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The Rozhkova Family Story

Submitted 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.

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Brant Dunham, Family Story

Hi, 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.

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Family StoryMaureen Ballatori