CEO Update

I hope you had a wonderful holiday season and are having a good start to 2023. We have lots of exciting things happening at National Scleroderma Foundation this month. Read on to learn more.

January Stakeholder Update

Our next stakeholder update is January 25 @ 3:00 pm ET! Register now to hear updates on progress in our exciting work to strengthen our organization and to build capacity for growth in support of individuals affected by scleroderma, to expand our education programs, and to build greater resources for research funding.

Amazon Smile

Were you gifted something just a LITTLE bit different than what you may have hoped for this holiday season? Looking to treat yourself in the new year? Well, you can support the Foundation every time you shop, at no cost to you using AmazonSmile!

Visit on your web browser or the Amazon Shopping app for iOS and Android phones to activate. Signing up is quick and easy, and to date the Foundation has received more than $23,000 in support from Amazon shoppers!  

Kicking off our 25th Anniversary

The new year marks the start of our 25th anniversary! To kick off our anniversary in style, a few of our members and staff have a message to share. Check out the video below and stay tuned for more to come throughout the year.

Highlights from Our Mission Pillars

  • Advocacy & SupportThe recently passed omnibus package that is headed to President Biden for his signature includes $370 million for the Peer-Reviewed Medical Research Program, level funded with FY 2022 within the DOD budget, and scleroderma is included as eligible for study! Thank you, advocates!
  • Our Teens and Parents Scleroderma Support Group is meeting January 25, 2023 @ 6:00 PM MT. You can find event details, along with other support group meetings happening this month on our website at
  • EducationSave the date for our 2023 National Scleroderma Conference! We’ll be hosting a HYBRID educational conference online and in person in Orlando, Florida July 14-16, 2023. Registration goes live later this month.
  • Research: Last month, the Board approved funding for eight new research projects in FY 2023. Notifications have gone out to all applicants, and new awardees will be announced in the spring issue of The Voice magazine All funded projects were rated as High Impact by the peer review committee, and the success rate for FY 2023 applicants is 30%. The total investment in these new projects is $1.6 Million and includes 3 New Investigator Awards and 5 Established Investigator Awards

Ready to Return!

We convened an internal task force last year to assess our readiness to return to in-person meetings and events, and have gathered input from the medical, scientific, and patient communities as well. We look forward to presenting formal recommendations to the Board for consideration later this month, with anticipated rollout of guidance for our chapters in March 2023.

No alt text provided for this image

We returned to our in-person outdoor walks last year to great success, and our first walk of 2023 is coming up next month in Coconut Creek, Florida – you can register for our Southeast Florida Chapter Stepping Out to Cure Scleroderma Walk on February 26 now!

New Membership Program 

We are excited to announce that this year we’ve launched a new membership program this new year! Our new membership program has two levels you can choose from, brings many more exciting benefits to members, and offers a digital subscription to our signature publication, Scleroderma Voice magazine, to everyone who becomes a member. Learn more at

Thank you for your continued leadership and support in service of those living with scleroderma. Wishing you all a happy and healthy new year!