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| eLetter #999 | December 9, 2022 |
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Kids Get Scleroderma Too! Videos Are Now Available on YouTube
Don’t worry if you missed out on this year’s virtual conference, all videos are now available on our YouTube page. These education videos cover a wide range of topics, such as scleroderma clinical trials, preventative care, benefits of music therapy and much more! Don’t miss out on this great content delivered by scleroderma experts from around the country!
WATCH
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RENEW Study
The University of Michigan Scleroderma team invites you to participate in the RENEW clinical trial. The program targets fatigue and may improve your energy. You can help researchers improve lives of people with scleroderma! Contact the research team.
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Newly Diagnosed Support Group
VIRTUAL: 7 p.m., Eastern Time, Wednesday, Dec. 14
Patients newly diagnosed as having scleroderma face an overwhelming number of questions about how it will affect their lives. Participation in a support group is one way to obtain information and receive support from others. Email support group leader Ron Sasso at newlydiagnosedsg@scleroderma.org for the zoom link.
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Thank You to the Lasting Mark Foundation
The National Scleroderma would like to express our gratitude to A Lasting Mark Foundation for bringing the holiday spirit to our pediatric community. They graciously donated personalized swag bags and a note to bring holiday cheer. You can learn more about A Lasting Mark Foundation here.
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SYNC Holiday Party
VIRTUAL: 7 p.m., Eastern Time, Friday, Dec. 16
Join the Tri-State Chapter and the Hospital for Special Surgery for the Scleroderma, Vasculitis and Myositis Center's Winter 2022 Patient Education Forum. Email alippincott@scleroderma.org or ttolzman@scleroderma.org.
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The 20%: A Virtual Support Group for Males Living with Scleroderma
ZOOM: 7 p.m., Eastern Time, Wednesday, Dec. 28
Scleroderma diagnoses are less common among males. In fact, only 20% of individuals living with scleroderma are male. We have designed a support group, especially for males with scleroderma. In it, you will learn scleroderma tips and resources and find support from others in your position. Each meeting will focus on a different topic from mental health to intimacy and so much more. The group meets on the fourth Wednesday of the month (with some exceptions) from 7 to 8 p.m., ET.
SIGN UP
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NORD Rare Disease Kickoff Video
The National Organization for Rare Disorders recently hosted its Rare Disease Day Kickoff webinar. The recording is now available. Rare Disease Day is Feb. 28!
WATCH
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Mogil's Mobcast with Erin Raber
On the recent episode of Mogil's Mobcast, Ann talks with Erin Raber, a board-certified music therapist, clinical mental health counselor and certified sound healing practitioner. She teaches us the importance of music for our health and how to use music in our everyday routines. Get ready to hum!
LISTEN
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Disclaimer: The National 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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