| | | For anyone who has lost a loved one or friend in military service to our country, we stand by you today and every day. Thank you to all who serve our country and support our community every day.
In observance of the Memorial Day holiday, the National Scleroderma Foundation offices will be closed on Monday, May 29.
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| | | Join Us This June For Our Special #TealTalk Series #TealTalk is officially coming to you starting next week!
Join us as we kick off Scleroderma Awareness Month with a #TealTalk Table on June 1. During our #TealTalk roundtable discussions, you can meet other members of the scleroderma community and share your respective journeys.
-Thursday, June 1: #TealTalk Table
-Thursday, June 8: #TealTalk Table
-Thursday, June 15: #TealTalk Table
-Thursday, June 22: #TealTalk Table
-Thursday, June 29: #TealTalk Table
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| | | Stepping Out to Cure Scleroderma |
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| | | Every Life Foundation For Rare Diseases is hosting their first every virtual Youth Hill Day. Advocates ages 10-18 years will have the opportunity to virtually meet with their Members of Congress and share their rare disease story. Virtual trainings will be held prior to hill day. More information and registration can be found here. |
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| | | 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. |
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| | | Thank You Conference Sponsors! We are grateful for the support of our 2023 National Scleroderma Conference Sponsors! They will be joining us in Orlando, July 14-16, for a special weekend of education and community!
Patron Sponsors: Janssen Pharmaceutical Companies of Johnson & Johnson and Horizon Therapeutics
Partner Sponsor: Boehringer Ingelheim |
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| | | Mogil's Mobcast with Michelle Morgan On the recent episode of Mogil's Mobcast, Ann talks with Michelle Morgan, a registered dietician nutritionist. The two will discuss nutrition in part one of the two part episode. Listen now at Apple Podcast. |
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| | | 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. |
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| | | 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. |
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| | | 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.
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