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| eLetter #920 | June 4, 2021 |
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Awareness Month: Your Biggest Strength
Ian Crego is a Michigan high school student with scleroderma. Also known as "Courageous Crego," Ian defines his biggest strength as "perseverance." It’s a trait that describes Ian and so many others with scleroderma worldwide. You can watch Ian's video on the Foundation's social media sites (Facebook, Twitter, Instagram). Share and retweet to tell others about scleroderma and to help raise awareness. When posting about scleroderma on social media, please use #SclerodermaAwareness!
FACEBOOK • TWITTER • INSTAGRAM
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Connect & Thrive Together at the Virtual National Scleroderma Conference
July 17 & 18, 2021 - REGISTER TODAY
Don't miss out! Attend the virtual conference and get the same access to scleroderma experts and to others affected by scleroderma as would in person. Connect and thrive together. Register today (rates increase July 9):
- Person Living with Scleroderma $30
- General Admission $50
- Business/Academia $125
Members receive a 29% discount code. scleroderma.org/becomeamember.
REGISTER
Thank you to our generous sponsors. Presenting Sponsor: Boehringer Ingelheim. Corporate Partner: Talaris Therapeutics. Partners: Horizon Therapeutics, Genentech.
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Scleroderma Awareness Live Q&A
FACEBOOK LIVE: Thursday, June 17, 2021; 3 p.m. Eastern Time
Join the South Carolina Chapter and rheumatologists from the Medical University of South Carolina (MUSC Health), Richard M. Silver, M.D., and DeAnna Baker-Frost, M.D., Ph.D., for a Facebook Live Q&A regarding scleroderma.
ATTEND
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Important Updates Regarding Mask Wearing for Immunocompromised Individuals with SSc
Updated May 17, 2021
With the recent CDC announcement of new guidelines on mask wearing, the Scleroderma Foundation's Medical & Scientific Advisory Board issued the following statement:
The Scleroderma Foundation’s MSAB Leadership Committee agrees with the CDC guidelines for those who have a condition or are on medications that weaken the immune system. Recent studies suggest that immunocomprimised people, particularly those on mycophenolate mofetil, may have had less than 50% effectiveness of the vaccine. Thus, they strongly recommend that people diagnosed with scleroderma/systemic sclerosis who are receiving immunosuppressive therapies such as mycophenolate mofetil and rituximab and those who live with them should continue to wear face masks, practice social distancing, avoid crowds and poorly ventilated indoor spaces, and use diligence in frequent hand washing.
These guidelines, along with more information and recommendations for individuals affected by scleroderma about COVID-19 are posted at scleroderma.org/covid19. Please check this page from time to time for updates.
COVID‑19
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Scleroderma Treatment Options
VIDEO: Laure K. Hummers, M.D., Sc.M.
Dr. Laura Hummers discusses systemic sclerosis and the treatment of skin and lungs. She covers the assessment and treatment of skin diseases, differentiating limited scleroderma onset and diffuse scleroderma onset, the differences in Raynaud Phenomenon, and how medical professionals screen and treat for these diagnoses.
VIDEO
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SYNC Meet Up
ZOOM: Friday, June 11, 2021, 7 p.m. Eastern Time
Young adults with scleroderma, ages 18 to 42, are invited to join the SYNC Meet Up (Scleroderma Young Adults Needing Connection).
For more details, email sdtristate@sclerodermatristate.org or agietzen@scleroderma.org. See you then!
REGISTER
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Showcase Your Business at Conference
Do you work for a company or nonprofit striving to help people living with scleroderma? You're invited to showcase your organization's programs, products, or services at the 2021 National Scleroderma Conference, "Connect and Thrive Together." This all-virtual event is July 17-18, 2021, attracting hundreds of people living with scleroderma, their family members and caregivers, and the world's leading scleroderma healthcare professionals and researchers. Visit the exhibitor page on the Conference website today to learn how to claim your virtual booth in the exhibit hall!
EXHIBITORS
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Disclaimer: The Scleroderma Foundation in no way
endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is
provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.
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