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.
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.
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.
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.
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.
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.
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.
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.
Jeff is the past Board Secretary and past Foundation Chair . Jeff has been on the board and an Executive Committee member since 2001.
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.
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.
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.
Lee lives in Houston, TX, with his wife Maite and his daughters Sara and Ana (diagnosed with PMLD at 18months).
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.
