To help people living with scleroderma locate the care they need, and to highlight the exceptional providers in the field, the National Scleroderma Foundation is launching a new logo for Designed Scleroderma Research & Treatment Centers. This logo will be used to note one of three designation levels the Foundation will use to recognize outstanding centers and programs. Designated Scleroderma Research & Treatment Centers Scleroderma Clinical Centers Specialized Centers All the centers and programs recognized by one of these tiers are considered exceptional. Work is being underw ..read more

Please join us in welcoming Brian Perkins as the Director of Communications. In this role, he will oversee all communications efforts for the National Scleroderma Foundation and its 13 chapters. Brian comes to us from St. Louis Community College and has been working in communications for more than 15 years. He is based in the St. Louis area and will work remotely. “It is an incredible privilege to join the Foundation’s passionate team. I am excited to support the leaders, the chapters, and the incredible community of volunteers that work relentlessly to improve the lives of people affected b ..read more

Please join us in welcoming Kryston Skinner as the Executive Director of the Pacific Northwest Chapter. Kryston joins the team on Tuesday, March 26. In this role, she will oversee the Pacific Northwest Chapter, and lead them in their programs, services, and fundraising efforts.  Kryston comes to us from iVet360 where she was responsible for the project management, consulting and marketing strategy for more than 30 veterinary hospitals. She is based in Portland, Oregon and will work remotely.   “Raised by a mother whose invisible illness remained undiagnosed for years, I’m deeply ..read more

Please join us in welcoming Lorraine Biaggi as the Executive Director of the Florida & Puerto Rico Chapter. Lorraine joins the team on Monday, March 25. In this role, she will oversee the Florida & Puerto Rico Chapter, and lead them in their programs, services, and fundraising efforts.  Lorraine comes to us from the Museum of Contemporary Art in North Miami. She is based out of the Miami area, and will work remotely.  “I am excited to join the Foundation and team as Executive Director for the Florida & Puerto Rico Chapter. Together, we will deepen our commitment to provid ..read more

Please join us in welcoming Mirian Moultrie as the Executive Director of the New England Chapter. Mirian joined the team on Monday, March 18. In this role, she will oversee the New England Chapter, and lead them in their programs, services, and fundraising efforts.  Mirian comes to us from Big Brothers Big Sisters of Eastern Massachusetts, where she was the Regional Director of the South Coast. She is based in New Bedford, MA, and will work remotely.  “It’s my honor to be joining the team at the National Scleroderma Foundation as the Executive Director for the New England Chapter. I ..read more

National Scleroderma Foundation today announced a partnership with Komodo Health, a leading healthcare technology company. Through the new collaboration, the National Scleroderma Foundation will apply Komodo’s technology and patient-level insights to address some of the biggest challenges Scleroderma patients face as they navigate their healthcare journeys.  “This partnership, paired with insights from our patient champions, will enable the Foundation to generate accurate insights and deepen our understanding of the patient experience in scleroderma,” said Mary J. Wheatley, Chief Executiv ..read more

DANVERS, MA – The National Scleroderma Foundation (Foundation) is proud to announce the 2024 grant recipients, awarding seven prestigious grants to a mix of new and established investigators. This year’s awards,  totaling $1.4 million, underscore our ongoing commitment to propelling research forward, edging closer to a cure. The Foundation’s rigorous, peer-reviewed research grants program, helmed by the Foundation’s Research Committee, prioritizes scientific merit and provides funding for both early career and established investigators working to unravel the complexities of scleroderma. T ..read more

DANVERS, MA. – The National Scleroderma Foundation is proud to announce the creation of the Neerja Marwaha Bhagat Research Scholar Fellowship. This prestigious fellowship aims to support scleroderma researchers dedicated to uncovering the origins and developing a cure for scleroderma.   The fellowship is named in memory of Neerja Marwaha Bhagat, a revered leader of the National Scleroderma Foundation Mid-Atlantic Chapter, who passionately served as Chapter Chair for over a decade. Bhagat’s unwavering commitment to advancing scleroderma awareness and her significant contributions to the co ..read more

Today, on Rare Disease Day, the National Scleroderma Foundation (Foundation) joins the global community in raising awareness and advocating for greater support for those affected by rare diseases, particularly scleroderma. Rare Disease Day serves as a poignant reminder of the challenges faced by individuals living with rare diseases and the urgent need for increased understanding, research, and support.   Scleroderma affects more than 300,000 individuals across the U.S. and is widely unknown. For those living with scleroderma, Rare Disease Day is an opportunity to teach others about scler ..read more

DANVERS, MA., February 26, 2024 – On February 24, the 2024 Stepping Out to Cure Scleroderma walk season kicked off in Coconut Creek, Florida. This year, walks will be held across the country by our thirteen chapters throughout the year. These events help unite the scleroderma community, raise awareness for the rare disease, and provide essential funding for the National Scleroderma Foundation. Since 1997, members of the scleroderma community have joined together to increase awareness and funds through Stepping Out to Cure Scleroderma walks. Currently, scleroderma affects more than 300,000 ..read more