National Scleroderma Foundation

Join us for Scleroderma Awareness Month

June is Scleroderma Awareness Month! All month long, Lets Talk About Scleroderma and elevate the conversation supporting those battling this chronic disease. To join us all month long, visit scleroderma.org/tealtalk

#TealTalk

Celebrity Ambassador Ashley Barron Joins #TealTalk Live!

We had a great time kicking off Scleroderma Awareness Month with you at our first #TealTalk Table. Don’t forget you can join us during our other roundtable discussions this month (June 8, 15, 22, and 29) by registering here.

On Tuesday, June 6, Celebrity Ambassador Ashley Barron will join CEO Mary J. Wheatley to kick off our first #TealTalk Live of the season.

Be sure to visit our Facebook page at 12 pm EST on June 6 to catch the conversation! www.facebook.com/sclerodermaUS.

Our other #TealTalk Lives are on June 13, 20, and 27.

Sign up for the 2023 National Scleroderma Conference and Kids Get Scleroderma Too! Conference

Have you registered for the 2023 National Scleroderma Conference and KGS2? The conference will be in Orlando, Florida from July 14-16. If you cannot attend in person, you can attend virtually! Visit the link and sign up today!

Action Alert extended

We have extended our Action Alert! Contact your Senators and ask that they support the inclusion of scleroderma in the Department of Defense’s Peer-Reviewed Medical Research Program. We ask that you reach out to your Senators no later than June 30, 2023.

Take action

Thank You Conference Exhibitors!

Thank you to our 2023 National Scleroderma Conference exhibitors. Stop by their booth to learn about their products and services! Interested in being an exhibitor? Reach out to corporate@scleroderma.org.

Learn more

2023 Conference Exhibitors:

Janssen Pharmaceutical Companies and Johnson & Johnson

Horizon Therapeutics

Boehringer Ingelheim

Chemomab Therapeutics

United Therapeutics

aTyr Pharma

Scleroderma Research Foundation

Arthritis National Research Foundation

Prometheus Therapeutics

Celebrate 20 years of Stepping Out to Cure Scleroderma at Conference

Join us as we celebrate 20 years of Stepping Out to Cure Scleroderma on Saturday, July 15 at the upcoming conference! Learn more about all our walk location by visiting scleroderma.org/steppingout.

Invitation to patients to participate in a public meeting about research methods to study scleroderma

We invite patients with scleroderma to a virtual public meeting on June 8, 2023, from 9 a.m. - 1 p.m. Eastern, aimed at receiving input on outcome measures in systemic sclerosis (scleroderma). The public format is to elicit input from the multiple stakeholders, including patients, clinicians, investigators, non-profit Foundations, industry partners, the US Food and Drug Administration (FDA), and the US National Institutes of Health (NIH) on the current status of outcome measures ready (or nearly ready) for registration-level clinical trials that would lead to approval of drugs for use by patients with scleroderma. This meeting will include segments on outcomes for various domains of scleroderma, including skin disease, Raynaud’s phenomenon, digital ulcers, interstitial lung disease, pulmonary arterial hypertension, global assessment, and biomarkers.

Patients will have the opportunity to ask questions and leave comments. This is an excellent opportunity for patients with scleroderma to both be informed about current research methods and to provide their input to investigators and government officials.

If you plan to attend, please register by clicking on the link below. Feel free to share this notice with others who may be interested in attending this meeting. There is no charge to participate in this meeting.

Learn more

Following the meeting, the minutes of the meetings and the recorded Zoom video will be made available on the SCTC website https://sclerodermaclinicaltrialsconsortium.org

Announcing Funding Opportunities for the 2024 Grant Cycle

The National Scleroderma Foundation is the leading nonprofit supporter of peer-reviewed, scleroderma research to discover the cause, understand the mechanism, and overcome scleroderma forever. Since its inception, the Foundation has committed over $30.8 million for scleroderma research, which continues as a priority of our mission.

Funding opportunities are available for early career and established investigators, and applications are due by September 15, 2023.

Learn more at scleroderma.org/researchapply.

Parents of Children Living with Scleroderma Support Group

ZOOM: 7:30 p.m., Eastern, Wednesday, June 7

If you care for a child living with scleroderma, do not miss the Parents of Children with Scleroderma Online Support Group! The group covers various topics to help parents navigate caring for children with scleroderma and finding support. The group meets virtually via Zoom on the first Wednesday of even months (e.g., June, August, etc.) from 7:30 - 9 p.m., and the first Wednesday of odd months (e.g., July, September, etc.) from 3 - 4:30 p.m. Email Pamela Pour for the meeting information.

BIPOC Special Meeting: Mental Health and Wellness

ZOOM: 4 p.m., Eastern, Sunday, June 11

Guest Speaker: Nicole Wilson, Lecturer at the University of Washington-School of Social Work, MEd, MSW

Following the presentation, there will be breakout rooms to continue the conversation. Register in advance for this webinar.

Scleroderma Young Adults Needing Connection Support Group

ZOOM: 7:00 p.m., Eastern, Friday, June 2

The SYNC support group will meet today and discuss advocating for scleroderma. If you are interested in joining, please email Amanda Lippincott, alippincott@scleroderma.org, or Tiare Tolzmann, ttolzmann@scleroderma.org.