CEO Update: April 2023

Call for Volunteers

The Foundation is now accepting nominations for volunteer leadership service for the Board of Directors, as well as the Patient Advisory Board and Medical and Scientific Advisory Board. Pending approval, new leaders will begin service July 1, 2023, and serve a three-year term ending June 30, 2026.

 >> Click the links below to self-nominate, or share with a colleague, or e-mail for more information!  

Upcoming Events

  • April 8 Patient Education Day hosted by the Rocky Mountain Chapter (more details available here)
  • April 22 Michigan Chapter’s Mount Pleasant Stepping Out Walk (Register here)
  • April 26, 2023 Quarterly stakeholder update (Register here)
  • May 4-6 Hosting 2 CME programs at the Congress of Clinical Rheumatology in Destin, Florida (Register here)

Upcoming Meetings and Events

  •  March 20, 2023 | Clinical Trials: What you need to know with Maureen Mayes, MD (Register here)
  • March 31, 2023 | Advances in Scleroderma Research Global Webinar (Register here)
  • April 1 Amy K. Parrish Educational Event hosted by the South Carolina Chapter (Hybrid event, register here)
  • April 8 Patient Education Day hosted by the Rocky Mountain Chapter (more details available here)
  • April 22 Michigan Chapter’s Mount Pleasant Stepping Out Walk (Register here)

Register now for National Scleroderma Conference

Join us this summer (July 14-16) for the National Scleroderma Conference in Orlando! This will be a hybrid conference, and virtual attendance will also be available for those unable to join us in person.

>> Registration is now open at

This year’s conference will feature more than 60 sessions, with topics ranging from juvenile scleroderma, to lung involvement in scleroderma, to what’s new in the world of research.

Stepping Out to Cure Scleroderma

Be sure to mark your calendar and join us at one of more than 30 Stepping Out to Cure Scleroderma walks this year. We walk to raise awareness and funding for promising scleroderma research.

Whether you join us in person or virtually, you are part of our vision to be a relentless force in finding a cure for scleroderma.

Sign up today at!

Jacob Davila Memorial Leadership Award

As a teenager, Jacob was diagnosed with scleroderma. Like many with the disease, his path was not an easy one. However, he chose to utilize his education and his convictions as a servant leader to embrace his diagnosis and humbly lead and support those within the scleroderma community. 

The Jacob Davila Memorial Leadership Award will be awarded annually to a Foundation volunteer that embodies the values that Jacob lived out every day. This award provides support for volunteers attending the National Scleroderma Conference to cover conference-related expenses. The inaugural award will be granted in 2023 during the National Scleroderma Foundation’s 25th anniversary.

The Jacob Davila Memorial Leadership Award is now accepting nominations for the 2023 inaugural award cycle. The deadline for submissions is April 14, 2023!

To learn more, visit

The spring issue of Scleroderma Voice magazine is out now!

The latest issue focuses on our support pillar and includes a look back at the last 25 years of advancing medical research, promoting disease awareness, and providing support and education to people with scleroderma, their families and support network. This issue also highlights our BIPOC support group, our Stepping Out walks, and our partnership with the Lasting Mark Foundation.

One of the benefits of being a member of the National Scleroderma Foundation is a subscription to our member magazine, “Scleroderma Voice.” Published four times each year, the magazine features stories about persons living with scleroderma, updated research information, answers to your questions about scleroderma and more. 

Become a member today to receive this publication!

Support Our Mission

I hope you are enjoying celebrating our 25th anniversary with us and hearing the many journeys of those in our community. 

For many in our community, the first step to accessing critical resources to help manage scleroderma is contacting the Foundation. With your help, we are expanding our support coverage across the country. Your gift will help us continue delivering support, research, and educational programs and services to people affected by scleroderma wherever they are.

 >> Donate today at

Thank you for your continued support of the National Scleroderma Foundation. Thanks to you, we are continuing to provide hope to hundreds of thousands of people across the country living with scleroderma.

If I can be helpful connecting you to resources to help navigate your journey, please don’t hesitate to reach out!

Mary J. Wheatley, IOM, CAE

Chief Executive Officer