Mary J. Wheatley, New Scleroderma Foundation CEO

The Scleroderma Foundation proudly announces the hiring of Mary J. Wheatley, IOM, CAE, as its new Chief Executive Officer as of July 1, 2021. Wheatley is a proven nonprofit executive with more than 15 years experience in research administration and nonprofit management, most recently as executive director of the Rheumatology Research Foundation. Wheatley succeeds Robert J. Riggs, who departs after 25 years for personal and family reasons. Read the full announcement online.

READ

Put Yourself in this Picture, Virtually! Attend Conference on a Scholarship

APPLICATION DEADLINE: JUNE 1, 5 PM EASTERN

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 and must meet the following criteria: a) financial need; b) thoroughness and thoughtfulness of answers to the application questions; c) consideration given to applicants actively involved in Scleroderma Foundation activities; and d) priority given to applicants attending their first Scleroderma Foundation conference.

APPLY

Memorial Day Office Closure

MONDAY, MAY 31, 2021

In observance of the Memorial Day holiday, the Scleroderma Foundation national office will be closed on Monday, May 31. Calls to (800) 722-4673 and emails to SFinfo@scleroderma.org will be answered on Tuesday, June 1.  

Visit the Foundation's website for a wealth of information about the disease, and to find support groups or a Designated Scleroderma Research & Treatment Center.

SCLERODERMA.ORG

June is Scleroderma Awareness Month

Join us as we celebrate Scleroderma Awareness Month throughout June. 

Follow our social media accounts to see stories of adults and children affected by scleroderma as they journey forward.  

Share and retweet, and tell others about scleroderma to help raise awareness.

Please use #SclerodermaAwareness whenever you post on social media during Awareness Month!

FACEBOOK • TWITTER • INSTAGRAM

Dee Burlile

State Proclamations Create Awareness

Each year, chapter leaders across the country request their governor to issue a Scleroderma Awareness Month state proclamation. This year, 30 requests were made. Several state proclamations were issued and many are pending. A state proclamation is a great way to raise awareness in your state and community.

STATE PROCLAMATIONS: Alabama, Arizona, Colorado, Florida, Georgia, Idaho, Illinois, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, New Hampshire, New Jersey, New Mexico, New York, Oregon, South Dakota, Tennessee, Texas, Utah, Vermont, Virginia, Washington, Wisconsin, and Wyoming.

For more information and to be an awareness advocate in your state, email advocacy@scleroderma.org. Pictured in the photo at left is Dee Burlile, a Scleroderma Advocate for the Northwest Chapter, holding a proclamation signed by Idaho Governor Brad Little.

ADVOCACY

Stepping Out to Cure Scleroderma

Our walk season is quickly approaching!

We are one community walking together to "stomp out" scleroderma. 

Join us today. More information can be found at scleroderma.org/steppingout.

If you don't see a walk in your area, please continue to check our website for updates..

STEPPING OUT

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

Yan Wang, M.D., 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 Yan Wang, M.D., Ph.D., Cleveland Clinic Foundation. His project is titled "The Role of Hyaluronan and O-GlcNAcylation in Fibroblast Turnover and Function in Scleroderma." Learn more about this project and the other 2021 research grant recipients on the Foundation's website.

RESEARCH

Connect & Thrive Together at the Virtual National Scleroderma Conference

July 17 & 18, 2021

Don't miss out! attend the virtual conference without the expense of traveling. Get the same access to scleroderma experts and to others affected by scleroderma. Connect and thrive together. Register today:

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

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

REGISTER

Sunday Sitdown

FACEBOOK LIVE: May 30, 1 p.m. Eastern Time (12 p.m. CT, 11 a.m. MT, 10 a.m. PT)

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.

Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

WATCH

Researching Your Child's Medical Records

VIRTUAL: Parents of Children with Scleroderma Support Group, June 2, 2021, 7:30 p.m. to 9 p.m. Eastern Time

As a parent, you advocate for your child’s health and medical care. But along the way, questions are sure to pop up. Join us for an online support group on June 2 from 7:30-9:00 p.m. to learn how to research your child’s medical needs and find answers quickly and effectively. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

REGISTER

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

Gold Corporate Sponsor

Silver Corporate Sponsor