| | | FY 2022 Annual Report available online Our Fiscal Year 2022 Annual Report is now available on our website! This report serves as a summary of the Foundation's activities over the fiscal year. |
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| | | | National Scleroderma Foundation CEO message - 25 years of support
CEO Mary J. Wheatley shares a message reflecting on the 25 years of support the National Scleroderma Foundation has provided to individuals living with the disease. |
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| | | | Have you found your 2023 Stepping Out to Cure Scleroderma walk?
The 2023 walk season has launched! Celebrate the 20th anniversary of Stepping Out to Cure Scleroderma in your community by finding your walk today. With more than 35 walks scheduled across the country – both in person and virtually, there is an opportunity for everyone to take part. Visit scleroderma.org/steppingout to sign up today. Please remember, walks continue to be added regularly to this site. |
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| | | Updated COVID-19 guidance regarding Evusheld The National Scleroderma Foundation encourages appropriate vaccines and treatments to protect individuals within the scleroderma community from the serious complications that can result from COVID-19. Individuals should work with their medical team to ensure appropriate care. We are sharing important information from federal public health officials related to the treatment of COVID-19, that is supported by the National Scleroderma Foundation’s Medical & Scientific Advisory Board. To learn more about our COVID-19 guidance regarding Evusheld, visit our website. |
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| | | Help Someone Get More Involved
Know someone who wants to get more involved with the Foundation? You can help them get started by giving them the gift of a Champion Membership!
Cost: $35 per year ($45 international)
Benefits: 10 exclusive member benefits, including a printed subscription to our Scleroderma Voice magazine, an exclusive opportunity to meet our CEO and more!
Impact: Priceless
To give someone this special gift, call our office at (800) 722-HOPE [4673] or complete our online form at scleroderma.org/membership. Don’t forget to become a member yourself, too! |
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| | | Digital ulcers in systemic sclerosis survey
Do you have digital ulcers due to systemic sclerosis? Take this survey to help researchers understand patients’ perspectives related to digital ulcers. |
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| | | National Scleroderma Foundation partner, HealthWell Foundation, launches new Patient Assistance Program
We are grateful to our partner HealthWell Foundation for launching a new Patient Assistance Program for SSc-ILD! Learn more at HealthWell’s website. |
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| | | RARE Compassion Program: Now Accepting Applications
The 2023 RARE Compassion Program is now accepting applications. Visit the RARE Compassion Program website to learn more. |
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| | | Mogil's Mobcast with Susan Murphy, ScD, OTR and Mary Alore On this episode of Mogil's Mobcast, Ann talks with Professor Susan Murphy and Mary Alore, Peer Mentor, and RENEW Health Coach. During the podcast, they discuss different programs being implemented at the University of Michigan, including the mentor program, the Backers, and research. |
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| | | | Sunday Sit-Down with Lucille Last Sunday, Lucille Miller held her Sunday Sit-Down and was joined by Angel Soto, Manager of Education at the National Scleroderma Foundation, to discuss the National Scleroderma Conference. |
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| | | | National Scleroderma Foundation awards $1.6 million for treatment and cure research On Thursday, Feb. 2, the National Scleroderma Foundation announced its annual grant awards totaling $1.6 million to help identify and develop new treatments and a cure for scleroderma. The grants will be distributed among eight new and established researchers (also known as investigators) who are focused on the disease that affects more than 300,000 Americans.
Congratulations to our 2023 grant recipients:
Rafael Contreras, Ph.D., University of Minnesota
Marta Marx Fund for the Eradication of Scleroderma Award - Established Investigator Award
Roxane Darbousset, Ph.D., Boston Children’s Hospital
The Mark Flapan Award – New Investigator Award
Justin Lui, M.D., Boston University
Walter and Marie Coyle Award – New Investigator Award
Natalie Saini, MSc, Ph.D., Medical University of South Carolina
Established Investigator Award
Elena Netchiporouk, M.D. M.Sc. FRCPC, The Research Institute of the McGill University Health Centre
Established Investigator Award
Peter Morawski, Ph.D., Benaroya Research Institute at Virginia Mason
New Investigator Award
Andreea Bujor, M.D., Ph.D., Boston University
Established Investigator Award
Suzanne Li, M.D., Ph.D., Hackensack University Medical Center
Established Investigator Award |
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| | | | ZOOM: 7 p.m., Eastern, monthly on the fourth Thursday
Q1 2023 dates: Jan. 25, Feb. 23, March 23
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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