group of pmd network members at an event

Meet the team

Behind the PMD Foundation is a group of people deeply committed to the families we serve. Our Board combines lived experience of PMD and professional expertise to guide our work and shape our future.

Executive Comittee

Storm Greenway

Executive Board Chair

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.

Angi Dunham

Vice-Chair

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.

Patricia Bohlmann-Schmidt

Director of Global Operations

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.

Doug Harter

Treasurer

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 Hobson

Board Emeritus

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.

Judy Beamer

Board Member

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 Jordan

Board Member

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 Leonard

Board Member

Jeff is the past Board Secretary and past Foundation Chair . Jeff has been on the board and an Executive Committee member since 2001.

Paul Erena

Board Member

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.

Marianne Bal

Board Member

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.

Steve Ostrolencki

Board Member

Steve brings more than 20 years of experience across the nonprofit and business sectors at both regional and national levels. His career in healthcare philanthropy includes work with two leading research and teaching institutions in Northeast Ohio, where he supported innovations advancing medical education from research to the patient’s bedside. Steve has built strong coalitions among grateful patients, physicians, corporate partners, and pharmaceutical sponsors to drive meaningful impact.

Lee Robinson

Board Member

Lee lives in Houston, TX, with his wife Maite and his daughters Sara and Ana (diagnosed with PMLD at 18months).

Maite Robinson

Board Member

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.

Bess Petronijevic

Board Member

Bess is an Australian mother, disability advocate and passionate voice for families living with Pelizeaus–Merzbacher disease (PMD).

Scientific Advisory Board

The PMD Foundation’s Scientific Advisory Board is composed of experts in leukodystrophies, neurology, genetics, and rare disease research. Our Board provides scientific guidance and helps ensure that the Foundation’s educational materials, research initiatives, and advocacy efforts reflect current evidence and best practice.

Meet the Board