Leadership

President, Executive Committee Chair

Carla retired from Bank of America as a Senior Vice President in Operations. She was diagnosed with Scleroderma in 2012. Carla joined the Capital District Support Group for scleroderma patients. Subsequently, she became the Group Leader and a board member of the Scleroderma Tri-State Chapter. Carla became involved with the Steffens Foundation because of her passion to not only help other patients but primarily to educate those in the health profession about this extremely rare disease.

Carla studied at the State University of NY and Vanderbilt University ABA Bank Operations. Obtained certification as a Treasury Professional with the Association of Financial Professionals.

Email: cgage@steffens-scleroderma.org

Vice President, Executive Committee Member

Bruce joined our board in the fall of 2021. He has been passionately involved with the scleroderma community for over 25 years. His wife was diagnosed with scleroderma in 1993 and tragically lost her battle to this difficult disease in 2000. He was a volunteer, a board member and for the past 5 years the Executive Director of the Tri-State Chapter of the Scleroderma Foundation, retiring in July 2021.

He has worked with many of the fine people connected to the Steffens Foundation since its inception over a decade ago. Attending, assisting, and collaborating on a number of Steffen's activities and initiatives. It is his desire to bring his understanding of scleroderma as a caregiver, his business management experience, and board knowledge to the foundation, with the mutual goal to grow our outreach and expand our mission going forward in this next decade.

Email: bcowan@steffens-scleroderma.org

Committee Member, Administrator of degosdisease.org

As a resolute Registered Nurse for more than 25 years, Theresa’s experience spans rehabilitative medicine, both as a clinical and administrative nurse, oncology nursing, Life Care Planning and currently hospice nursing, promoting palliative and hospice system services across NEPA. She aspires to maximize comfort, safety, and the independence of patients during their end-of-life care. She studied at Penn State University and was part of the final graduating class of the Scranton Community Center School of Nursing, in 1994.

In 2014, Theresa was diagnosed with Systemic Degos disease and since that time has been on a mission, working closely with the Board of Directors of the Steffens Scleroderma Foundation, to help people afflicted with the disease, connect with highly committed medical professionals who can provide treatments that slow, suspend, and hopefully “one day” cure Degos disease.

As one of very few known to have Systemic Degos disease, Theresa has tirelessly worked on behalf of others through degosdisease.org, a website to which she serves as administrator, and through the incredible work being done by the National Institutes of Health and Steffens Scleroderma Board Members, especially Dr. Lee Shapiro who selflessly advocated for Theresa to receive life-sustaining treatments that made it possible for her to lead a productive life and be with us today. Theresa’s story, which is still unfolding, is featured in a February 26, 2016, article in the Philadelphia Inquirer.

See her patient story.

Email: theresa@degosdisease.org

Executive Committee Member

Celeste graduated from the University of Buffalo with a BS in Occupational Therapy in 1977, and earned her Hand Therapy Certification (CHT), in 1992. She worked the first decade of her career at Rancho Los Amigos Medical Center in Southern California, where she had a wide berth of experience in orthopedics and rehabilitation. Celeste began working in outpatient upper extremity rehabilitation in 1990. She has also worked as an adjunct faculty member at Russell Sage Graduate School of Occupational Therapy for many years.

She currently is at Albany Memorial Hand Center in Albany NY, where she has worked in full-time patient care since 1995. This is where she gained her direct experience with the Scleroderma population and realized the tremendous needs present in the upper extremity.

Celeste developed a commitment to pursue the education of hand therapists, with the goal of early access to quality upper extremity care for those with this rare disease. In addition, she has been a member of the American Society of Hand Therapists since 1993. Celeste has presented lectures locally and regionally since the first few years of her career.

Email: cfreeman@steffens-scleroderma.org

Secretary, Executive Committee Member

Amy Gietzen from Buffalo, New York is both a scleroderma patient and Patient Advocate, whose mission includes raising awareness of Scleroderma on many levels. Amy’s diagnosis came at the early age of just 19 years old. Her journey followed many twists and turns. Realizing her needs as well as other young adults living with scleroderma might be different, she started to advocate for young adults and travel to various colleges and hospitals, support groups, and conferences to speak about her journey and educate clinicians. In 2016 Amy created a virtual outlet for patients to connect, with The Scleroderma SuperStarz on Inspire.

She continues to provide support through her virtual meetups called SYNC and through her work with SPIN (Scleroderma Patient-Centered Intervention Network. She was elected to sit on the Scleroderma TriState Chapter’s Board of Directors in 2020, Amy started to work with the Steffen’s Foundation as a Keynote speaker and panelist for their first Interprofessional Education Event in 2018. From then on, her passion for helping educate medical students and professionals took off.

She has been involved with the IPE events ever since, also volunteering on the EAC Committee and the Events Committee, and as of 2021 a newly elected Board member to the Steffens board of directors. She used her skills as a patient advocate to help spearhead a training seminar for patients who participate in the IPE every year called the Art of Advocacy. Her awareness and advocacy efforts continue to grow as she moves past her 20-year mark of living a life with Scleroderma and she has no intentions of slowing down.

Amy has written several pieces for her column on Scleroderma News. Her articles are informative and inspiring. Staying Alive with Scleroderma.

Email:agietzen@steffens-scleroderma.org

Executive Committee Member

Kerri Connolly began her journey as an advocate for the scleroderma community 30 years ago when her mother, Catherine, was diagnosed in 1993 with Limited Systemic Sclerosis. When her mother passed away in 2008 as a result of her illness, Kerri became determined to help fill a significant gap in available educational resources for scleroderma patients and their care partners.

For two decades, she has worked closely with leading global scleroderma medical experts to develop comprehensive patient and physician education materials to help the community better understand and manage the disease. Currently, Kerri works as a patient advocate in the pharmaceutical/ biotechnology industry.

Her goal is to incorporate patient insights early in the research and development process for the acceleration of better patient outcomes. Kerri is excited to join the Steffens Scleroderma Foundation to support its mission and help raise awareness of the power patients have in the medical community when they become educators. Kerri will be serving Steffens as an Executive Committee Member and the Communications Committee Chairperson.

Email: kconnolly@steffens-scleroderma.org

Treasurer, Executive Committee Member

Janet Sloan-McGonagle became a board member in July 2022. She is a retired banking executive having spent the first half of her career in the consumer bank and then moving to banking operations. Janet holds a BS from Simmons University and an MBA from Suffolk University. She acquired a certificate of Treasury Professional with the Association of Financial Professionals and holds a Six Sigma Green Belt.

Janet's interest in Scleroderma began 10 years ago when her close friend was diagnosed with the disease. She has long admired the work of the Steffens Scleroderma Foundation and recognizes the need to enlighten and educate health care professionals on both Scleroderma and Degos disease.

Janet lives in Boston and Scituate Massachusetts with her husband.

Committee Member

Patricia was diagnosed with Scleroderma and Sjogrens in 2014 after coping for many years with digestive and joint problems. She became a board member after being involved with the IPE and Events committee.

Patricia retired in 2010 after teaching for more than 30 years. She has volunteered her time to non-profit agencies. She also enjoys time with family and grandchildren.

Patricia has a BA degree from the College of Saint Rose, an MS degree and Advanced Certificate from the University at Albany and has been an NSF Fellow at Rutgers.

Committee Member

Rosemarie (Rosie) Van Patten became an active board member in 2018, shortly after her brother Lou Renna died on August 4, 2017, from complications of Scleroderma. Lou was on the board prior to his passing and Rosie wanted to volunteer on the Events and Education committees with the Steffens Scleroderma Foundation in his memory.

Dr. Van Patten is an Assistant Professor of Nursing at Siena College in Loudonville, NY. Prior to working at Siena College she worked at Russell Sage College in Troy and attended her first Interprofessional Education Program (IPE) with a few of her nursing students. She received her PhD in Education (with a specialization in Nursing) from Capella University in 2014 and her BS/MS (in nursing education) from the State University of New York Institute of Technology at Utica/Rome in 2011. She received her Associate's degree in Nursing from Maria College in Albany, NY in 1979. She has a strong clinical background working at Ellis Medicine for 30+ years.

Committee Member

Mark is a senior-level executive with a demonstrated history of success leading all aspects of Contact Center Operations, Customer Relationship Management (CRM) and Marketing for International Correspondence Schools, Penn Foster, Ashworth College and The Princeton Review. He studied Information Sciences and Technology at Penn State and is certificated in Six Sigma by Villanova University.

A lifelong advocate for the underprivileged and underserved, Mark is on the Board of Directors for the United Way of Lackawanna and Wayne Counties in PA, and is a member of the Rotary Club of Scranton. As a Board member for the Steffens Scleroderma Foundation, Mark is partnering with his wife, Theresa, and other board members, to advance the foundation’s agenda on behalf of those afflicted with Scleroderma and Degos disease.

Committee Member