National Scleroderma Foundation Announces New Leaders

New members welcomed to the Board of Directors, Medical and Scientific Advisory Board, and Patient Advisory Board

The National Scleroderma Foundation has elected the Fiscal Year 2024 Board of Directors, Medical & Scientific Advisory Board, and Patient Advisory Board. Each board is essential to leading and guiding the Foundation with its critical mission work with volunteer leader terms beginning July 1, 2023.

The three volunteer boards serve different roles for the Foundation. The Board of Directors exercises its fiduciary responsibilities to ensure the success of the Foundation. It oversees all Foundation programs and services and is the governing board for the organization. The Medical & Scientific Advisory Board serves as a link to the medical and research communities in scleroderma and plays a leading role in fostering healthcare provider education, mentoring young investigators, and assisting with the development of Foundation programs designed to accomplish these goals. Lastly, the aim of the newly established Patient Advisory Board is to amplify the voice of the patient community and take a leading role in disseminating patient information and education, developing timely educational programming, and establishing research priorities. In addition, the Patient Advisory Board is charged with mentoring new and potential leaders and assisting with the development of Foundation programs and services designed to achieve the mission priorities.

“On behalf of the entire National Scleroderma Foundation, I am grateful to all our leaders who have stepped forward in service this year. We are fortunate to have a wealth of knowledge, expertise, and experience on our boards from experts in lived experience, caregiving, governance, fundraising, research, and treatment,” shared Board Chair Kevin Boyanowski. “I have benefited greatly from learning from those I’ve served with in my time with the Foundation over the past decade, and I look forward to working with this new class of leaders this year.”  

Leaders are recruited via an open nominations process annually, whereby anyone interested in serving may apply. Candidates are vetted based on several factors, including current board composition and goals, commitment to advancing the Foundation’s mission, previous volunteer and leadership service, professional and personal experience, and expertise. The slate of candidates approved are a result of efforts to balance the boards accordingly.

For this service year, the Foundation Board of Directors has confirmed the following volunteer leadership appointments.

Board of Directors

Executive Committee
Kevin Boyanowski, Chair
Carol Feghali-Bostwick, PhD, Vice Chair
Cyndy Besselievre, CPA, Treasurer
Mike Levengood, Esq, Secretary
Cos Mallozzi, Immediate Past Chair

Linda J.B. Bornstein Baum, OD
Mary Blades
Courtney Caliendo, Esq.
Peggy Collins
Blake Embree
Zeba Hyder, MBA
Christina Loccke
Aaron (AJ) Nahmad
Mark Orozco, MBA
Tracy Porter, MEd, SPHR
Marcia Walker

Ex Officio
Jane Ladas, Chair, New England Chapter
Nancy Waltermire, Chair, Mid-Atlantic Chapter
Peggy Collins, Chair, Chapter Leadership Council 
Evamarie Cole, Co-Chair, Patient Advisory Board
Karen Gottesman, Co-Chair, Patient Advisory Board
Katherine Torok, MD, Chair, Medical and Scientific Advisory Board
Mary J. Wheatley, IOM, CAE, Chief Executive Officer

Medical & Scientific Advisory Board

Steering Committee
Kathryn Torok, MD, Chair
Jessica Farrell, PharmD, Co-Chair, Patient Education Committee
Jessica Gordon, Co-Chair, Patient Education Committee
Laura Hummers, MD, Chair, Physician Education Committee
Richard Silver, MD, Chair, Research Committee
Virginia Steen, MD, Immediate Past Chair

Shervin Assassi, MD
Elana Bernstein, MD
Nunzio Bottini, MD, PhD
Soumya Chatterjee, MD, MS
Robyn Domsic, MD
Tracy Frech, MD
Kristin Highland, MD
Heidi Jacobe, MD
David Leader, DMD
Maureen D. Mayes, MD
Rishi Naik, MD
Janet Poole, PhD, OTR/L
Carrie Richardson, MD
Lesley Ann Saketkoo, MD
Robert Spiera, MD
Elizabeth Volkmann, MD, MS

Patients Advisory Board

Evamarie Cole, Co-Chair
Karen Gottesman, Co-Chair
Nikhil Bhat
Peggy Collins
Thomas Fry
Carla King
Amanda Lippincott
Ann Mogilevsky
Erion Moore
Monica Ramirez
Ron Sasso
Sade Taylor

Scleroderma is a rare rheumatic disease that affects connective tissue and the vascular system causing an overproduction of collagen (fibrosis) in the skin (localized scleroderma), and the internal organs (systemic sclerosis), which can be life-threatening. Anyone can have scleroderma. The cause is not yet known, and there is no cure. 

The National Scleroderma Foundation is a relentless force in finding a cure for scleroderma as it advances medical research, promotes disease awareness, and provides support and education for people with scleroderma, their families and support networks. Its highly regarded peer-reviewed research grant program aims to discover the cause, understand the mechanisms, and overcome scleroderma forever.