National Scleroderma Foundation recognizes outstanding chapters
Top honor at 2025 awards goes to Spanish language support group leader
The National Scleroderma Foundation has recognized several individuals — leaders in advocacy, fundraising, and patient support — and regional chapters for their service in advancing scleroderma awareness and research.
The 12 awards, given at the 2025 National Scleroderma Conference, held July 18-20 in St. Louis, were given for outstanding efforts in education, support, and money-raising, according to a foundation press release. Several recipients helped organize Stepping Out to Cure Scleroderma walks across the country, which serve as the signature awareness and fundraising event of the National Scleroderma Foundation
At the awards luncheon, advocate Monica Ramirez won the organization’s highest honor — the Lifetime Achievement Award.
“Her unwavering commitment to education, outreach, and support has touched lives across communities and borders,” the foundation stated.
Ramirez has led the nonprofit’s first Spanish language support group since 2020, and also built the first foundation support group in Puerto Rico. As well as helping organize the International Scleroderma Conference, Ramirez represented the scleroderma community in advocating for awareness, research funding, and access to care on the 2025 Hill Day in Washington, D.C.
Other awardees included Karen Gottesman, cochair of the patient advisory board and liaison to the medical and scientific advisory board, who won the National Volunteer of the Year award. Hannah Bose, of the Florida and Puerto Rico chapter, received the Chapter Volunteer of the Year award for her work organizing walk events in the Jacksonville area and expanding fundraising partnerships.
Florida and Puerto Rico chapter named Chapter of the Year
The Florida and Puerto Rico chapter also received the Chapter of the Year award, recognizing its ongoing efforts to support the foundation’s mission. Another chapter, the Mid-Atlantic chapter, received an honor for Outstanding Educational Program for its efforts in maximizing available resources in collaboration with MedStar Georgetown University Hospital, Penn Medicine, and Johns Hopkins Hospital.
Shervin Assassi, MD, at UT Health Houston, won the Doctor of the Year award. Assassi, codirector of the scleroderma program at McGovern Medical School, has worked to build a multidisciplinary treatment approach for patients and is active in scleroderma research. The award goes to a physician “whose dedication has improved the lives of thousands of people living with scleroderma and who demonstrates exceptional skills in clinical practice and patient education while maintaining the mission, vision, and values of the foundation,” the organization said.
Assassi is part of the leadership of the CONQUER Registry — fully known as the Collaborative National Quality and Efficacy Registry — a research registry from the Scleroderma Research Foundation. CONQUER has helped researchers identify a link between tobacco and worsening gastrointestinal symptoms, among other findings.
For his work in community building, Erion Moore II received the Jacob Davila Memorial Leadership Award. Carla King received the Messenger of Hope award for her work building inclusive support spaces and for her compassionate service to the scleroderma community. The Outstanding Patient Support award went to Maria Tafoya of the Rocky Mountain chapter for her work leading support groups and the Albuquerque Stepping Out to Cure Scleroderma walk.
Tiarè Tolzman of the Scleroderma Young Adults Needing Connection (SYNC) Support Group is the Support Group Volunteer of the Year. This virtual group provides a space for people ages 18 to 42 to connect with others with scleroderma. Planned informative programs include “Traveling with Scleroderma,” “Mental Health & Chronic Illness,” and “Raynaud’s & Scleroderma Awareness.”
2 advocates honored for National Scleroderma Foundation fundraising
For fundraising efforts, Len Cimini of the Mid-Atlantic chapter and Peggy Levengood of the Southeast chapter received honors. Cimini, whose wife has scleroderma, is a longtime leader of the Philadelphia area Stepping Out to Cure Scleroderma walk. Levengood began organizing a golf tournament fundraiser in Atlanta 13 years ago, and has raised more than $340,000 for the foundation.
Founded in 1998, the National Scleroderma Foundation funds support, education, and research to benefit people with scleroderma.
“The foundation is so proud to work alongside each of this year’s awardees. Each person recognized this year contributes day in and day out to improving the lives of people affected by scleroderma,” the nonprofit stated.
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