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| eLetter #1000 | December 16, 2022 |
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Caregiver Connection Support Group
ZOOM: 10 a.m., Mountain Time, Saturday, Dec.17
The Rocky Mountain Chapter will host the Caregiver Connection Support Group Meeting on Dec. 17. All caregivers are welcome to join. To attend, request the Zoom link by sending an email to Gary Keschl at garykeschl@gmail.com.
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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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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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Caregiver Support Group
VIRTUAL: 7 p.m., Eastern Time, Thursday, Dec. 29
This group provides a source of emotional and social support and resources for those caring for a loved one with scleroderma. We will share self-care strategies and tools to reduce stress and enhance coping. We welcome adults, spouses, family members or friends in the caregiver role to attend.
In case you missed it, read “Creating Spaces for Our Caregivers” featuring Rachel Meyn Ugarte and her mother, Elizabeth and learn how this virtual group came to be.
Email support group leader Debbie Haussler at caregivers@scleroderma.org to be added to the calendar invite with the zoom link.
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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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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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