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December 22, 2023 | #1054 |
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Happy holiday season to all who celebrate! This year, we are reminded of the incredible effort and positivity our community has provided to move our mission forward for the past 25 years. Thank you for supporting the National Scleroderma Foundation and individuals affected by scleroderma.
Our offices will be closed until January 2, but many of our services will still be available! Visit scleroderma.org to find the resources you need. We are also taking calls during our normal business hours for donations, membership and memorials.
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| Spread love for the scleroderma community this holiday season
Still looking for the perfect gift to give your loved one for the holidays? Look no further.
Whether launching new support groups for patients, teaching our community how to manage the disease, or directly supporting scientific and medical professionals with research funding, your gift expands our reach and makes a real-life difference for people living with scleroderma.
Deck the halls with boughs of hope by making your holiday gift today at scleroderma.org/winter or call our office at (800) 722-4673.
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| 25th Anniversary – one moment at a time 2017 – Research partnerships gain foothold
The NIH established a national commission on scleroderma and fibrosis research to develop a long-term, comprehensive plan for research. Also that year, the Foundation engaged nine pharmaceutical/biotech companies to successfully develop unique Patient as Partners Focused Drugs programs. The programs continue to grow.
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| Walk for a cure – together or apart! Whether you are walking together or apart, walk for a cure. Join us in 2024 at our Stepping Out to Cure Scleroderma walks. More information to come about walks all over the country! |
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| Foundation represented at NIAMS Forum for Clinical Mentored K Awardees The Foundation recently shared during the NIAMS Forum for Clinical Mentored K Awardees information on its research program and opportunities for investigators including:
- New and Established Investigator grants
- Early Career Investigator mentoring workshops
- Advances in Scleroderma Research Global Webinar
- Pre-Doctoral Summer Fellowship program.
The purpose of the meeting was to foster a shared and open discussion of challenges K investigators face in pursuing research independence. |
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| New research study for working adults with scleroderma Adults (18 years old or older) who are working and have systemic scleroderma (systemic sclerosis): A research team is studying a virtual intervention to support people with scleroderma who are in the workforce. For more info, E-mail mthelanderhill@salud.unm.edu or jpoole@salud.unm.edu. |
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| Webinar: CAR T Cell Therapy in Systemic Sclerosis Join Dr. Dinesh Khanna and Dr. Monalisa Ghosh for an in-depth discussion on what you need to know about the new and exciting CAR T Cell therapy. The webinar will be held at 12 p.m. ET on Feb. 16 via Zoom. |
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| Stay tuned for the 2024 National Scleroderma Conference We cannot wait to see you all at the 2024 National Scleroderma Conference in Seattle, Washington, July 19-21! Stay tuned for more details. |
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The 20%: Males living with Scleroderma Support Group ZOOM: Dec. 27, 7 p.m. ET
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. |
| ZOOM: Dec. 27, 7 p.m. ET
Please join us on Wednesday, Dec. 27 at 7 p.m. ET for our support group meeting for people living with scleroderma who identify as members of the LGBTQ+ community.
Email lgbtq@scleroderma.org for the meeting link. Any questions, please email Caryn Anatriello, Manager of Advocacy and Support.
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ZOOM: Dec. 28, 7 p.m. ET
The Caregivers Support Group will meet on Dec. 28 at 7 p.m. Eastern. For more information, email caregivers@scleroderma.org.
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| This week in scleroderma news:
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