Thanks to our community's continued generosity and support, the PMD Foundation remains on solid ground midway through 2023.
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Pelizaeus-Merzbacher Disease: A Caregiver Assessment of Disease Impact has been published with support from the PMD Foundation. The article from Ionis Pharmaceuticals was first published online on February 6, 2023, in Volume 38, Issue 1-2 of the Journal of Child Neurology.
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Thanks to our community's continued generosity and support, the PMD Foundation has entered the new year on solid ground.
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Medical researchers studying emerging therapeutic approaches to help treat Pelizaeus-Merzbacher Disease (PMD) have announced the development of a system to identify distinct clinical cohorts and biomarkers for the grading of severity and progression of the disease.
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Each year on the last day of February, the Rare Disease Community comes together for Rare Disease Day. This year, on February 28, 2023, the international community will share its colors to promote awareness, share stories, and shed light on the rare diseases affecting over 300 million people worldwide.
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Masanori Tanaka shares the story of her son, Harutoshi:
Harutoshi was born in October 2005 in Japan. Shortly after his birth, We noticed that he had nystagmus, and after a few months and some genetic testing, he was diagnosed with PMD
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Gina shares the story of her sons, Garrett and Gavin:
Garrett, now 24, and Gavin, 20, were diagnosed with classic duplication PMD in 2001. Garrett was 3, and Gavin was not yet born.
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What do you do when you beat a previous year’s fundraising goal? Double it! This year’s Run, Walk or Roll doubled its 2022 goal from $25,000 to $50,000 and exceeded expectations with $67,067 raised from sponsorships, registrations, donations, and t-shirt sales.
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The Fernandez family lives in the Village of Haverstraw, NY. Mom, Elaine, works as a Notary and Receptionist for the Village office. Her son, Liam, is her little sunshine. He is five years old and lives with Pelizaeus-Merzbacher Disease.
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The PMD Foundation ended June 2022 with total cash of $195,823, down just over $48,000 from the end of last year given the first payment on one of our recently awarded research grants.
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Maite Robinson shares the story of her daughter, Ana:
One of the first things parents learn about their special needs babies is that they possess incredible courage. Our Ana is no exception: she suffers from Pelizaeus-Merzbacher-Like Disease and still meets every day with a smile.
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Cierra Neff shares the story of her daughter, October Childress:
My pregnancy with October was uneventful up until the end. I was having a lot of pain and discomfort. I had to do stress tests daily and they decided to induce me a week early. The doctor thought October was underweight.
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Pelizaeus-Merzbacher Disease and Pelizaeus-Merzbacher-Like Disease are not impeded by geographic boundaries. Families from all over the world face PMD and PMLD challenges and many parents need help with providing for their children’s needs.
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NEW JERSEY - With compelling competition for its research grant, the PMD Foundation is pleased to announce the unprecedented funding of two research projects totaling $200,000. Instead of the originally proposed $100,000 grant award, the PMD Foundation has doubled the grant and chosen both Dr. Larry S. Sherman, PhD and a collaborative team led by Dr. Enrico Silvio Bertini, MD, and Dr. Davide Tonduti, MD, to receive a PMD Foundation Research Grant.
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Adriana Lourenço of Bauru in Spain shares the story of her son, Daniel:
My son, Daniel, is 14 years old. We received the diagnosis of Pelizaeus-Merzbacher just two years ago.
We’re holding a Smile-a-thon inspired by our PMD and PMLD kids – when they smile, it lights up the room. We want to share their light (and yours!) with the rest of the world to build awareness of PMD and PMLD for Rare Disease Day.
In breaking news regarding the treatment of Pelizaeus-Merzbacher disease (PMD), Case Western Reserve University and Ionis Pharmaceuticals, Inc. have signed an exclusive license agreement to advance and commercialize a therapeutic approach discovered by university medical researchers…
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First of all, thank you for your continued generosity towards the PMD Foundation in 2021! The Foundation took in donations of over $64,000 for the year, close to 2020’s level.
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Each September we honor Leukodystrophy month with our annual Run, Walk or Roll event. We invite teams to make miles towards our goal of $25,000 to help fund research for PMD treatments and therapies. 100% of registration fees go to the PMD Foundation’s work on education, research, service and advocacy for those affected by Pelizaeus-Merzbacher Disease.
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Sara Stuckey shares the story of her son, Mason:
Mason began displaying symptoms around 4 - 5 months old. He was initially diagnosed with cerebral palsy just before his second birthday. However, two months ago, we received the diagnosis of SPG2 from the neurologist although the genetic counselor believes it is PMD Null. Mason will be 4 years old in November.
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