Board of Directors

The Board is the governing body of the Foundation. The Board supports the work of the Foundation and provides leadership and strategic governance to advance the mission.

Our Board of Directors

Kathryn Torok, MD

Chair, Medical and Scientific Advisory Board

Kevin Boyanowski, MBA

Charlotte, North Carolina

Kevin and his family have been engaged with the Foundation for many years, beginning with their engagement and service with the Ohio chapter. Kevin has been instrumental in leading the Foundation’s transformative strategic planning efforts. He has a strong background in business strategy and analytics, as well as global services and sourcing.

Vice Chair

Carol Feghali-Bostwick, PhD

Charleston, South Carolina

Dr. Bostwick was recruited to the Division of Rheumatology and Immunology in 2013 as the SmartStateand Kitty Trask Holt Endowed Chair and Professor of Medicine. She earned her Ph.D. in Microbiology and Immunology at Tulane. Dr. Feghali-Bostwick leads a team of clinical and basic scientists whose goal is to identify novel targets for therapy for scleroderma and other fibrosing conditions. Dr. Feghali-Bostwick also contributes to the mentoring of young physician and academic scientists.

Secretary

Marcia Walker

Tucson, Arizona

Marcia is a Vice President for Executive Search Services at Hagel & Company. Her company concentrates our services in the HR and Payroll software field as well as Executive Search for nonprofit organizations. Hagel Executive Search has been partnering with nonprofit organizations in the Pacific Northwest and other parts of the country since 1993. Marcia’s expertise in nonprofit governance and philanthropy have been an asset to the Foundation since her early days of volunteer leadership.

Treasurer

Blake Embree

Charlotte, North Carolina

Blake serves as COO for Strategic Programs and Process Improvement with Wells Fargo and possesses a unique blend of experience in strategic planning, performance improvement, business development and consulting. Blake serves for a family member who is living with scleroderma and hopes to lend his experience and skills to make a greater impact at the national level.

Member-at-Large

Linda J. Bornstein Baum, OD

Moorestown, New Jersey

Dr. Baum is an optometrist who practiced for decades before systemic sclerosis-associated interstitial lung disease led to a successful double lobar lung transplant. In addition to serving as a member of the national board of directors, Dr. Baum previously served on the Foundation’s Delaware Valley Chapter Board and is a panel reviewer for the Department of Defense Congressionally Directed Medical Research Program. Dr. Baum is a Gift of Life Ambassador and is active in professional and community organizations.

Member-at-Large

Mary Blades

Springfield, Missouri

Through the years, Mary has dedicated herself at both the local and national levels to advance the Scleroderma Foundation’s mission. She has persevered with constant energy and relentless commitment to affect growth within the organization to better serve people living with scleroderma. She served as president of the Missouri chapter for eight years and received the Lifetime Achievement Award from the Foundation in 2013.

Member-at-Large

Courtney Caliendo, Esq.

Alexandria, Virginia

Courtney began her involvement with the Foundation through the Southeast Florida chapter, where she served on the Board for many years. Ms. Caliendo is a trademark attorney for the U.S. Patent and Trademark Office. She is a graduate of Boston College (BA, MA) and the University of Miami (JD). Her expertise and enthusiasm are a tremendous asset to the board and the Foundation overall.

Member-at-Large

Tera Carter

Alexandria, Virginia

Tera recently joined the Board and has been a Scleroderma (systemic sclerosis) warrior since 2009. Despite her diagnosis, Tera has faithfully served her country for over 23 years in the Air Force Medical Service Corps as a healthcare administrator and has worked at various medical treatment facilities worldwide. She graduated with a master’s degree in computer management at Webster’s University and has her bachelor’s in healthcare administration from University of Maryland-Baltimore County. Tera currently resides in Alexandria, Virginia.

Member-at-Large

Scott Ceresnak, MD

Palo Alto, California

Scott looks forward to helping advance the mission of Foundation. On the professional side, Scott is a graduate of the seven-year BA/MD program at Rutgers University, and completed his medical training at Cornell, Columbia, and Stanford. He currently serves as the Director of the Pediatric Electrophysiology and Arrhythmia Service at Stanford University, where he is active in clinical care, medical education, and clinical research. He lives in Palo Alto, California with his wife and three young daughters. His oldest daughter Julia is a brave Scleroderma warrior who was diagnosed with Scleroderma (systemic sclerosis) at the age of 5.

Member-at-Large

Zeba Hyder, MBA

New York, New York

Zeba has been actively involved with National Scleroderma Foundation in the Tri-state chapter since 2016. She has also volunteered at a number of other not-for-profit organizations. Zeba has an executive-level background in Digital and Brand Marketing and Strategic Planning, working in the Financial Services industry in the USA and overseas. She was granted a US Patent for digital signatures. Zeba Hyder holds an MBA from the Questrom School of Business at Boston University.

Member-at-Large

Amanda Lippincott

Belvidere, New Jersey

Amanda serves as a Support Group Facilitator and previously served on the Patient Advisory Board. Amanda became involved with the Foundation in 2022, three years after her diagnosis. As someone living with scleroderma, Amanda deeply understands the challenges and uncertainties faced by patients and their families and is passionate about advocating for others, ensuring every voice in our community is heard and supported.

Member-at-Large

Aaron (AJ) Nahmad

Miami, Florida

A.J. Nahmad has served as President for Watsco, Inc., the largest distributor of HVAC/R products in North America and a publicly traded company on NYSE with annual sales exceeding $7 billion, since 2016. A.J. has an extensive background in strategy, innovation, and global business development. He cherishes moments with his wife and three children, stays active outdoors playing sports, and enjoys exploring diverse and delicious cuisine.

Member-at-Large

Tracy Porter, MEd, SPHR

Durham, North Carolina

Tracy serves as Chief People Officer at Taysha Gene Therapies. She has worked in rare disease patient advocacy and gene therapy for 12 years. Tracy is excited to share her professional experience in rare disease, past experience in fundraising coupled with her personal journey as a scleroderma patient in service of the Foundation with the ultimate goal of eradicating the disease entirely.

Member-at-Large

Michelle Smith

West Columbia, SC

Michelle has been actively involved with the Southeast Chapter since 2019, supporting the Thomas Mills Memorial 5K/Walk every year. She is passionate about raising funds in memory of her mother, who passed away from scleroderma. Michelle is driven by a personal connection to scleroderma and a desire to ensure others do not experience the same challenges her family faced. She looks forward to serving on the Board and contributing her skills in support of the Foundation’s work in finding a cure for scleroderma.

Member-at-Large

Nancy Waltermire

Whitehouse Station, New Jersey

Nancy is an experienced Certified Compliance professional with proven ability to manage multi-functional areas of operations and maintain compliance with federal regulations & state regulations. She has extensive experience in the Medicare Advantage, Special Needs Plans, & Part D Program. Nancy currently serves as Chair for the Mid-Atlantic Chapter Advisory Committee.

Co-Chair, Patient Advisory Board

Evamarie Cole

Evamarie has been an active volunteer leader with the Foundation since 2008, serving as a Support Group Leader, BIPOC Facilitator, Walk Leader, and speaker. She currently serves as Co-Chair of the Patient Advisory Board and is also on the Tri-State Chapter Advisory Committee. She is a passionate advocate and works tirelessly to raise awareness for scleroderma. Prior to her diagnosis with scleroderma, Eva worked as a legal assistant and paralegal.

Chair, Chapter Leadership Council

Peggy Collins

Peggy was diagnosed with scleroderma in 2012. After coming to terms with her diagnosis, she contacted the Upper Great Lakes Chapter and became a support group facilitator. Over time she increased her work with the chapter and eventually joined the Chapter Advisory Committee. Driven by the need to help the scleroderma community, she is now the chair of the CLC, helps with conferences and is a member of the board of directors. Her main goal is to help patients and caregivers navigate their journey until a cure is found.

Chair, Medical and Scientific Advisory Board

Kathryn Torok, MD

Dr. Torok is a pediatric rheumatologist and director of the Pediatric Scleroderma Clinic at UPMC Children’s Hospital of Pittsburgh. Dr. Torok earned her medical degree from the Penn State University College of Medicine and completed her fellowship UPMC Children’s Hospital in 2006. Dr. Torok helped to create and implement the Scleroderma Clinic, which provides treatment for children with localized and systemic scleroderma.

Chief Executive Officer

Mary J. Wheatley, IOM, CAE

Mary joined the Foundation team July 1, 2021, and has 20 years of experience in nonprofit management and research administration. She is a graduate of the University of Alabama at Birmingham (UAB) and is passionate about serving people living with chronic illnesses. She is grateful to serve the Foundation and advance its mission, and lives in Atlanta, Georgia with her husband Shannon and their three rescue dogs.

Chapter Leadership Council

The Chapter Leadership Council consists of prominent individuals from the scleroderma community who partner for the overall success of the National Scleroderma Foundation. The Council is made up of the Chairs of each chapter’s Chapter Advisory Committee. One representative from the Chapter Leadership Council sits on the National Board of Directors. In addition to creating a nationwide network of chapter leadership, this allows for greater linkage and communication between the National Board of Directors and Chapters. Learn more

Please contact Amanda Graham, Staff Liaison for more information