Ed has worked extensively with the Vasculitis Foundation for over 14 years to further both organizations’ mission to help educate patients about PAN and all the vasculitides. He served on the Education and Awareness Council and joined the VF Board of Directors in 2010.
In 2009, Ed and his friend (now wife), Mary Seubert, organized “The VF Power Pedal for Rare Diseases”, a week-long bike ride from Pittsburgh, Pennsylvania to Washington, D.C. The goal of the 325-mile ride was to raise awareness of rare diseases; their impact on society and the need to increase funding to organizations such as the NIH’s Office of Rare Diseases which is taking a lead role in researching rare and orphan diseases. The group of 13 riders delivered a collection of letters and messages from patients with rare diseases, caregivers and doctors and Ed blogged daily about the trip to raise awareness of the group’s efforts. Click here to read the blog.
Ed is the producer of the Extraordinary Vasculitis Stories Project, which features interviews of patients and family members sharing the impact that vasculitis has had on their lives. This year Ed expanded the project to interview physicians discussing diagnosis and treatment, and researchers discussing their studies. The goal of the Video Project is to spread awareness by sharing vasculitis stories of extraordinary people to highlight the impact these chronic conditions have on vasculitis patients and also on their families, friends and loved ones.