Judy lives in Gettysburg, Pennsylvania with her husband, Rick, and grandson, Brayden. Brayden turned 8 years old in July 2022 and was diagnosed with PMD when he was one year old. He is the first generation to be diagnosed in their family.
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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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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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Brittney lives in Lafitte, Louisiana, with her husband Jonathan, and two boys Zedin (6) and Zayce (2). Zayce was diagnosed with PMD on September 29th, 2021.
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Kathy and her husband Jim live in Skaneateles Falls, NY on their family farm, raising beef cattle, pigs and chickens. They are proud parents of 4 children and 7 grandchildren. Kathy is also the Aunt of Jaden Manley who was diagnosed with PMD in 2001.
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Angi lives in Denham Springs, LA and is married to Brandon. Angi and Brandon have four children: Kailey, Kendall, Kathlyn and Brant. Brant was born August 22, 2019 and diagnosed with PMD on September 28, 2020.
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Jeff is the past Board Secretary and past Foundation Chair . Jeff has been on the board and an Executive Committee member since 2001.
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Dave lives in Mexico, NY with his wife Julie, and son Jaden, who turned 16 December 2017. Dave has been an active member of the Foundation since the beginning and has provided a great amount of leadership to the Foundation over the years and has served many roles during his tenure with the Foundation.
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Jeremy has a passion for volunteering his time with various organizations including the United Way, Big Brothers Big Sisters, and his local church. The PMD Foundation is one organization that Jeremy, along with many other PMD families, has identified as a great resource of information and support following the diagnosis of his son Camden.
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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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I have been a PMD dad for 28-plus years now, and James has kept me honest all this time. I am semi-retired from a 30-something year career as a special education teacher. I have worked as a volunteer for parent advocacy groups here in Vermont for a long time, and I’m excited to try to share what I can with the Foundation.
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She is married to Sander and they have two children: Selina and Valentin. Valentin was born in June 2013 and diagnosed in December 2015 with PMD. Ever since Marianne is constantly in touch with colleagues from various departments and researchers around the world to find a cure or a treatment and build a strong case to be heard at bio-pharmaceutical companies. Furthermore, she wants to ensure that Europe (ELA – European Leukodystrophies Association) and USA (PMD Foundation) work closely together to achieve our common global goal to cure PMD.
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A driven business leader and steward for causes dear to her heart, Maureen contributes greatly to non-profit organizations nationwide – primarily contributing to organizations focused on entrepreneurship, women’s issues and youth.
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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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Angela Chlebowski lives in Fairfield, CT with her husband Jonny and their three children: Jillian, Ian, and Chad. Chad was born on August 1, 2008, and was diagnosed with PMD in July 2013. He is the first person to be affected by PMD in their family.
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Lee lives in Houston, TX, with his wife Maite and his daughters Sara and Ana (diagnosed with PMLD at 18months).
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Maite was born in Santiago, Chile, and came to live in Houston, TX, in 2000, where she met her husband, Lee. Maite’s career at IBM, Compaq, and HP spanned 15 years in Human Resources and Management Development.
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