Ed Becker, founder and director of the PAN Support Network (PSN), was presented the 2013 Bruce Macdonald Spirit Award on July 13, at the 2013 Vasculitis Symposium in Philadelphia. The PSN was created in 1999 and connects patients with Polyarteritis nodosa, their families and health care professionals for educational purposes, research efforts and support. The PSN is dedicated in memory of Florence Becker, Ed’s mother, who passed away from complications of PAN in September 1998. It was her death that resulted in the creation of the PSN to help patients seek knowledge and support about PAN.
The PSN has over 700 members worldwide and is a member of the Vasculitis Clinical Research Consortium. Through Ed’s efforts, more research is being conducted on PAN than ever before. The organization provides a Rapid Response Team for patients in crisis, an extensive resource library and online chats and interviews with members of the vasculitis community.
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.
The Bruce Macdonald Volunteer Spirit Award was established in 2006 to honor outstanding volunteers of the Vasculitis Foundation. The award is named after Bruce Macdonald, a longtime member and volunteer of the organization who led the way in connecting patients and family members with the educational and support resources needed to live successfully with vasculitis.