Board Members

Board of Directors

The Steffens Scleroderma Foundation is governed by a talented and dedicated volunteer board of directors.

Executive Committee & Officers

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Carla Gage
President, Treasurer, 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.

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Linda Meenan
Vice President, Executive Committee Member

Linda has been a member and Vice-President of the Steffens BOD since its founding. She is Chair of the Education and Awareness Committee, and a member of Executive and Grants Committees. Linda is an ardent advocate for improving the resources, awareness, and quality of care for those living with rare diseases. As a creative educator for 33 years, her passion for excellence, innovation, and service to others has been recognized at national, state, and local levels. These awards include:  Principal contributor and representative for a National School of Excellence Award, US Dept. of Education; Partnership in Education (PIE) Award of Excellence for a national business-education collaborative Mentoring program; General Electric COMPASS Award for creating a successful corporate Mentoring program; New York State Education Department recognition for initiating and leading a school-wide, collaborative internet wiring “Barn Raising” Program, (the initial project was completely volunteer-funded by corporations including GE, Verizon, and Lockheed Martin); the National Council for the Social Studies Good Neighbor Recognition for innovative education; and Today’s Women Award for significant community contributions, YWCA NorthEastern NY.  Linda holds a BA in Social Studies and Secondary Education from Marywood University, and a MA in History from College of Saint Rose. 

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Celeste Freeman, OTR/L, CHT
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.

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Michelle Morgan, MS, RDN, CDN
Secretary, Executive Committee Member

Michelle is the Dietetic Internship Director and an Assistant Professor of Practice in Nutrition Science at Russell Sage College. Michelle received a Bachelor of Science degree in Nutrition Science from Russell Sage College and completed her Master of Science degree in Clinical Nutrition and Dietetics from New York University while concurrently completing a clinically focused dietetic internship at the James J. Peters Veterans Affairs Medical Center. Prior to joining the Sage community, Michelle worked in the clinical setting at New York Presbyterian Hospital/Weill Cornell Medical Center in New York City and has experience providing medical nutrition therapy to various patient populations. Michelle has held leadership positions within the Hudson Valley Academy of Nutrition and Dietetics and currently serves as the Secretary of the Steffens Scleroderma Foundation. 


Patricia Clausi

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.


Jennifer Hoffman


Donna Langan

Donna retired from the New York State Legislature as a thirty-year senior legislative professional, with expertise in constituent services, state and federal government relations, and public policy. After learning about Scleroderma from her health care provider, she wanted to become involved with the Steffens Foundation. She joined the board of the Tri-State Chapter. Donna is an active board member with Father Peter Young’s Housing Industries and Treatment Centers and also a former board member with the Little Sisters of the Poor. She also served on the CHARLEE advisory board, Hospitably House Inc., Camp Good Days, and Special Times, and was the Coordinator for the 350th Celebration of the Discovery of Lake George.  Donna has BA in English with a minor in History from Ladycliff College and did post-graduate work at SUNY Albany and Sage Colleges.


Peter Meenan, PhD

Peter is a member of the Steffens BOD since its inception. He is the Technology Officer, and chair of the Grants Committee. His interest is in helping others living with scleroderma and Degos Disease. In his 33 year career with General Electric, primarily at GE’s Global Research Center in Niskayuna, NY., Dr. Mennan's most important successes were a result of forging close collaborations across multiple disciplines and diverse businesses. Dr. Meenan has held management positions in a spectrum of technologies: advanced visualization and imaging, including medical applications, information systems, electronics, factory automation, and research strategic planning. He has extensive experience in business interactions at the CEO, CIO, and Executive V.P. levels. Dr. Meenan has been recognized with publication and corporate awards for technology development and has written or co-authored over 25 technical publications. In addition, Dr. Meenan has been awarded five  US patents. He holds a  B.S degree in electrical engineering, Manhattan College;  two MS degrees,  nuclear engineering Univ. of Arizona and operations research, Union College; and PhD in Engineering and Administrative Systems, Union College.


Theresa Slayton

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 www.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 story on our Patient Story page


Rosemarie R. Van Patten, PhD

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.

 


Amy Gietzen

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 connects, with The Scleroderma SuperStarz on Inspire and continues to provide support through her virtual meet-ups 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, and most recently Amy and several other patients have started their own nonprofit, during the pandemic called S.H.O.U.T. International (Scleros Helping Others Unite Together), offering qualified applicants, economic relief. 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 to help educate medical students and professionals took off and 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. 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.

See her story on our Patient Story page

Mark Slayton 

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.

Christine Marceline

Christine was diagnosed with Scleroderma in 2015.  When the ramifications of her illness made continuing in her profession no longer possible, she redirected her efforts to volunteering with Steffens Scleroderma Foundation as a volunteer in 2019 on the Events and Communications Committees to help spread awareness about Scleroderma.  She assists in organizing fundraising efforts and increasing communications on social media, the website, and editing our newsletter.  Christine was inducted to the board in 2021.

Christine received a Bachelor of Arts degree in Hospitality Sales from Johnson & Wales University.  She has over 20+ years of experience as an executive assistant and legal secretary.


Steve Rosenblum, Project Manager

Steve Rosenblum joined the Steffens Foundation in the role of Project Manager in May 2021. Steve established a “Core Team” to focus on the dissemination of information regarding the highly successful Interprofessional Education program in hopes of inspiring replication of the program elsewhere. The team recently presented at the National Scleroderma Foundation’s annual conference (see margin), and assisted in the submission of a large grant. The team’s upcoming focus will be the creation of an eBook “How-To” Guide to Planning and Hosting a Scleroderma IPE with the goal of identifying and mentoring one or more new pilot IPE programs in the coming year.

Steve comes with extensive experience in project management and event planning and has proven himself invaluable in moving our recent projects forward in a timely and efficient manner.

 

In Memoriam

Lou Renna