Storm is a Kansas City native. He lives with his wife Natasha and son River who was diagnosed with PMD at 6 months old. At the time of writing this River is almost a year old.
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Angi Dunham is a dedicated wife, mom, and real estate business owner who leads with optimism and purpose. As the mother of a son with Pelizaeus-Merzbacher disease, she is deeply committed to advocacy and strengthening the PMD community.
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As a devoted mother to Theo, Melanie understands the joys and challenges of raising a child with PMD and its associated medical complexities. Theo was born in 2016 and diagnosed with connatal PMD at six months old. After moving from Germany in 2019, Melanie and her family now reside in the Chicago suburbs.
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Patricia is a fellow PMD mother and is located in Germany. Patricia is very engaged and ambitious and similar to me, eager to create more awareness for rare diseases and help other families with PMD.
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Doug lives in Madison, NJ with his wife and 3 daughters. He is also the proud father of Jack who was born with PMD and died at age 6 in 2013.
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Don was one of the three Founding Board Members in 1999. In 2001, he was elected Board Chair at the first meeting of the Board of Trustees. He retired as Chair in 2015 and is a member emeritus.
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