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.
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.
Read MoreThanks to our community's continued generosity and support, the PMD Foundation remains on solid ground midway through 2023.
Read MorePelizaeus-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.
Read MoreThanks to our community's continued generosity and support, the PMD Foundation has entered the new year on solid ground.
Read MoreMedical 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.
Read MoreEach 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.
Read MoreMasanori 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
Read MoreGina 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.
Read MoreWhat 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.
Read MoreThe 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.
Read MoreThe 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.
Read MoreMaite 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.
Read MoreCierra 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.
Read MorePelizaeus-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.
Read MoreNEW 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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