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

June is Scleroderma Awareness Month

Join us as we celebrate Scleroderma Awareness Month throughout the month of June. All month long we will be sharing personal stories of individuals affected by scleroderma. Make sure to follow, share/retweet, and help spread awareness.

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Stephanie Stanford, Ph.D.

2021 Research Grant Awards

The Scleroderma Foundation awards research grants in two categories, Established Investigator, to provide an opportunity to pursue innovative ideas, and New Investigator, to provide funding to gather sufficient data to warrant funding on a larger scale from the National Institutes of Health.

One of four New Investigator grants was awarded to Stephanie Stanford, Ph.D., Hospital for Special Surgery. Her project is titled "LCM-RNAseq for Topological Mapping of Scleroderma Skin Pathology." Learn more about this project and the other 2021 research grant recipients on the Foundation's website.

RESEARCH

Connect & Thrive Together

Virtual National Scleroderma Conference, July 17 & 18, 2021

When you connect with others affected by scleroderma, you build bonds and generate positive energy that can sustain you throughout the year. Attend the 2021 virtual National Scleroderma Conference to learn and to connect. Register today for one of three categories:

• Person Living with Scleroderma $30
• General Admission* $50
• Business/Academia $125

Members receive a 29 percent discount code. scleroderma.org/becomeamember.

*Caregivers, spouses, and partners register as General Admission. The Kids Get Scleroderma, Too! conference takes place later in the year.

REGISTER

Apply for a Conference Scholarship

Thanks to the generous support of many donors and chapters, conference scholarships have made it possible for hundreds of individuals affected by scleroderma to attend conference over the years. Scholarship recipients receive one full virtual conference registration pass. Available only to adults living with scleroderma, who are residents of the United States, scholarship applications are limited to one per family. Application criteria:

• Financial need
• Thoroughness and thoughtfulness of answers to the application questions.
• Consideration is given to applicants actively involved in Scleroderma Foundation activities.
• Priority is given to applicants attending their first Scleroderma Foundation conference.

APPLICATION DEADLINE is Tuesday, June 1, 2021, 5 p.m. Eastern Time.

APPLY

SSc with Associated ILD: Management Considerations and Future Directions

American Journal of  Managed Care, May 18, 2021

An article published in the May 18, 2021, edition of The American Journal of Managed Care addressed the management considerations and future directions of care for systemic sclerosis with associated interstitial lung disease. The article notes the expansion of treatment options with a recent FDA approval; however, acknowledges that there is a lack of codified treatment guidelines. But, there is the suggestion that reducing lung volume loss is possible with a combination of treatments. Read the full article online.

READ

Sustained Reduction in Lung Function Decline Over Longer-Term with Nintedanibin SSc-ILD

Healio News, May 15, 2021

An article published in the May 15, 2021, edition of Healio News Pulmonology reports that two-thirds of individuals with systemic sclerosis-associated interstitial lung disease who participated in the SENSCIS-ON trial, and who continued on nintedanib after the trial concluded, were able to maintain stable lung function or had improvement. Read the full article online.

READ

Mental Health Interventions for Scleroderma Patients in COVID-19 Lockdown Sees Mixed Results

Healio News, May 20, 2021

An article published in the May 20, 2021, edition of Healio Rheumatology reports on the a virtual group program aimed at providing mental health coping strategies design to reduce isolation during COVID-19 stay at home orders, among individuals who have scleroderma. The article cites the programs lack of significant improvement.  Read the full article online.

READ

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

Working from Home with Ticket to Work

WEBINAR: Wed., May 26, 2021, 3-4:30 p.m. Eastern Time

The May WISE (Work Incentive Seminar Event) webinar will highlight resources that can help Ticketholders make the decision to work, find jobs, and succeed while working from home. Specifically, the webinar will cover:

• How the Ticket Program can support Ticketholders as they work from home
• Advice for succeeding while working from home
• Services and supports offered by Ticket Program service providers

CHOOSEWORK

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