The VF Board of Directors is responsible for setting the strategic direction, policy and agenda for the Vasculitis Foundation. The Board governs on behalf of the VF members and ensures appropriate organizational performance which includes fulfilling the mission of the organization, determining its future direction, and managing the organization’s fiscal health. The Board’s role is to ensure that the VF establishes and maintains the trust of the vasculitis community by being clear in its mission, prudent and ethical in its activities, and accountable for its actions.
Karen Hirsch, Past-President
Karen joined the VF Board of Directors in 2012 after a family member was diagnosed with GPA/Wegener’s. She is interested in driving the change to find the cure and improve lives of those with vasculitis through research. Karen has served on the Marketing and Awareness Committees and in 2013 created the annual V-RED Award, which recognizes early diagnosis of vasculitis in our patient community. The annual competition seeks nominations from patients honoring the physicians who helped them get diagnosed with vasculitis.
She also is co-organizer (with fellow board member, Jason Wadler) of the annual Chicago Rally in the Alley which raised over $160,000 in five years. The bowling event brings together patients, families, and supporters of the VF to raise awareness of vasculitis and funds for the VF.
Karen has a background in health care administration and coordinated strategic planning and marketing at Children’s Memorial Hospital and was previously at Rush-Presbyterian-St. Luke’s Medical Center and the Illinois Hospital Association. She also serves on the board of the Daughters of Ayacucho Education Foundation and the Skin of Steel Foundation where she focuses on Strategic Planning and Social Media for Skin of Steel.
Suzanne DePaolis, President-Elect
Los Gatos, California
Suzanne’s passion for education led her through a career in teaching, but a diagnosis of EGPA abruptly changed that life path. She found herself in a position to channel her teaching to directly help other patients understand and manage their illness.
During the 2017 Symposium, Suzanne was publicly recognized for her outstanding work at helping educate patients and raise awareness about vasculitis. When the VF Board invited her to join, she readily accepted.
“ I bring a unique point of view which is the patient perspective,” said Suzanne. “I understand what patients need, and I also understand what we may need in the future. Sharing these patient needs to the Board is very important. I’m both honored and excited to be in that role.”
Don Nagle, Treasurer
Glen Rock, New Jersey
Fifteen years ago, at the age of 19, Don’s daughter, Sarah, was diagnosed with vasculitis. Today, she continues to manage her illness and live a relatively normal life with her family. Don credits the VF with being an invaluable source of information and support.
“The VF exposed us to vasculitis experts, and to other patients,” says Don. “They gave us hope to manage her illness. I joined the Board because I believe in how the VF improves patient lives.”
Don recently retired as Chief Financial Officer and Senior Vice President for the Asia Society. “I’m excited to bring my knowledge of non-profits, as well as my financial experience to help the VF fulfill its mission.”
Pamela Pekerman, Vice President of Resource Development
Scarsdale, New York
Pamela’s father, Ilya, passed away from Wegener’s granulomatosis in December 2009 and Pamela, her mother, Malvina, and sister, Michelle, established the Ilya Pekerman Research Fund in his memory. Pamela organizes the annual Shop-4-Vasculitis fundraiser to benefit the VF. She has spent over a decade in the media industry, particularly in broadcasting and aims to help the VF land more exposure by increasing awareness and education about vasculitis. Pamela is eager to leverage her media contacts to learn how the VF can best position our story and communications and thereby always receive a green light from producers, as well as maximum coverage in print and key online publications.
“I have a passion to ensure that everyone has access to knowledgeable doctors and proper medical care for their vasculitis disease,” said Pamela when asked why she wanted to join the VF Board of Directors.
Jason M. Springer, MD, MS
Chair, Research Committee
Kansas City, Kansas
Dr. Springer is an Assistant Professor in Rheumatology and director of the Kansas University Medical Center Vasculitis Clinic. Prior to starting medical school, his father was diagnosed with vasculitis after developing symptoms of numbness in his feet. Although treated aggressively, he passed away six months after the initial diagnosis and the family was left with many unanswered questions.
During Dr. Springer’s residency in Internal Medicine at the University of Utah, he met and worked with Dr. Curry Koening, the director of the Utah Vasculitis Center. Dr. Koening encouraged Dr. Springer to complete his general rheumatology and Vasculitis fellowship at the Cleveland Clinic Center for Vasculitis Care and Research.
In 2013 he joined the KU Medical Center and in 2015 officially opened the KU Vasculitis Clinic. The center provides patient care and also participates in multi-center research studies. Dr. Springer has compiled a team of specialists to care for patients with vasculitis. In addition, he hosts one-day regional conferences for patients and family members every other year.
Peter C. Grayson, MD, MSC
Dr. Grayson is the founder and principal investigator of the Translational Program in Vasculitis, established in 2013, and is the associate program director of the NIAMS Rheumatology Fellowship Training Program. He serves as the representative to a major international collaboration to develop novel diagnostic and updated classification criteria in several forms of systemic vasculitis. His research focus includes biomarker discovery and development through gene expression profiling and other genomic techniques, disease classification, clinical epidemiology, and immunology, and clinical trials in vasculitis.
Dr. Grayson is also an investigator with the Vasculitis Clinical Research Consortium (VCRC), which is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis. The goal to improve the care of patients with vasculitis.
Click here to watch a video of Dr. Grayson discussing his research.
Victor joined the board in October 2018. He had an Allstate Insurance Agency for 34 years in Stafford before selling the business and retiring in April 2018. Victor and his wife, Brenda, both volunteer as “Faces of Vasculitis” and have shared the story of his diagnosis and the impact that it had on both of their lives through his Extraordinary Patient video. He is always on the lookout for opportunities to share the knowledge he has learned from the VF and how it has positively impacted my life.
Victor has volunteered for many different organizations including the Boy Scouts of America, the Wild Turkey Federation, and his church. He is also active on several social media groups and is always happy to talk and mentor other patients.
Greg and his wife, Lynn, lost their son, Mark, on March 8, 2009, from Wegener’s granulomatosis (GPA, WG). Greg joined the board in 2011 to expand their efforts to raise awareness and understanding of vasculitis on a global basis so that other families don’t lose their loved ones. He and Lynn host informational tables at local health fairs and other venues to raise awareness of vasculitis and the Vasculitis Foundation. Greg serves on the Support and Education Committee as well as the Awareness Month committee. In April 2012 he arranged for fellow board member, Dr. Robert Lebovics, to be the featured guest on the Health and Home Report, a monthly syndicated program which airs nationwide on syndicated cable channels. The interview is one of the most-watched videos on the VF’s YouTube Education Channel.
Overland Park, Kansas
Allison joined the VF Board in October 2018. She is a professional musician, performer, teacher, and clinician. She was diagnosed with GPA/formerly Wegener’s at the age of 17, and now, as a 30-year old, provides a link between the adult world of VF management and young adults, a population which increases every year.
In 2011, Allison established Violin for Vasculitis, Inc. (VF4), a nonprofit awareness organization. Through V4V, her goal is to travel to all 50 states, giving free recitals in public venues to promote rare disease awareness. VF4 gained its nonprofit 501(c)(3) status in 2016, and to date has presented 35 events in 23 states. Through the years, she has amassed experience organizing events in various venues from start to finish, making personal contact with community leadership as well as vasculitis patients, and navigating the process to gain nonprofit status with the IRS.
Jason joined the VF Board of Directors in 2011 after being diagnosed with GPA/Wegener’s. He has served on the Marketing and Awareness Committees and his goal is to use his expertise to drive awareness of vasculitis and increase funding for research toward a cure. Jason shared, “I am a big believer in the power of community. Working together, we will have a greater chance of achieving our goals. I look forward to meeting more of the members and levering the power of this passionate community.”
Jason is also a co-organizer (with fellow board member, Karen Hirsch) of the annual Chicago Rally in the Alley held each fall. The event has raised over $160,000 over the past five years. The bowling event brings together patients, families, and supporters to raise awareness of vasculitis and funds for the VF.