PMD Foundation Announces New Leadership
20-year PMD Veteran Dave Manley passes baton to Storm Greenway
January 2024 – The Board of Directors of the PMD Foundation is pleased to announce the transition for the role of Board Chair. Storm Greenway is stepping into the role, following in the footsteps of Dave Manley, who served on the PMD Foundation Board for 20 years.
Storm’s professional experience in relationship and account management will be critical to continue the important work of the PMD Foundation. “Building relationships with people is simple, building relationships with a disease is not,” says Storm, whose son has PMD. “On first meeting Dave and taking time to process [my son's] diagnosis there were moments of grief and turmoil but there was also solace in knowing there was a determined community ready to help.”
Exiting Board Chair Dave Manley spent many months ensuring a smooth transition of his responsibilities to Storm and other board members. “The PMD Foundation has come a long way in the past 20 years thanks to the hard work of all of our volunteers and the support of our community,” says Dave. “Together we have made great strides and now have hope that we did not have in the past. However, there is still much work to be done. It is time for the next generation of families to take the lead. I look forward to watching Storm navigate The PMD Foundation through our next chapter and continue the fight for our PMD community.”
Multiple exciting initiatives are moving forward in the PMD community including:
Continued grant funding by the PMD Foundation to fund medical research on PMD.
Creating awareness of clinical trials by pharmaceutical companies.
Ongoing research in the form of a Natural History Study to better understand how the disease progresses over time.
Continued reporting on stories from PMD families on what it's like to live with the disease.
Storm stepped into the role of Board Chair in January 2024. He says, “Knowing that there was an opportunity to help my son and children like him allowed me to do what so many parents say they would do if they were put in a situation like mine, that is simply to do anything that I can for their child. I am no different, I was just in a place where I was given the opportunity. I am standing on the shoulders of giants who have done incredible things before me and it is an honor to be trusted to man the helm for The PMD Foundation into the uncharted waters that come ahead.”
The PMD Foundation Board of Directors is thrilled to have Storm in the position. Storm’s enthusiasm and dedication to PMD research and advocacy will allow the organization to continue to thrive.
The PMD Foundation serves those affected by PMD through education, research, service, and advocacy. Pelizaeus-Merzbacher Disease (PMD) is a rare, progressive, and degenerative central nervous system disorder that deteriorates coordination, motor abilities, and cognitive function. The disease is one of a group of disorders known as the leukodystrophies, which affect growth of the myelin sheath—the fatty covering that wraps around and protects nerve fibers in the brain. (NIH.gov)