Greetings!
Throughout the month of June, the SRF has been proud to celebrate Scleroderma Awareness month by launching our new #SayScleroderma campaign. All month long, we’ve been sharing stories of brave scleroderma warriors and challenging others to help spread awareness–both by saying the word and using the hashtag.
And the response has been incredible! By using your voices and creativity, you’ve made it clear that you value calling scleroderma by its name. To you, it’s more than just a rare disease or a word too difficult to say. My heartfelt thanks to all of you for using your power to help educate the world about what this complicated disease is and does, while we at the SRF remain steadfastly focused on finding a cure.
Gratefully,
|
|
Joanne Gold
Executive Director
|
|
A Matching Gift Doubles Your Impact |
|
This month, we launched our 2021 Research Challenge, which highlights a project that will give researchers the ability to understand scleroderma associated-interstitial lung disease (SSc-ILD) at the single-cell level, and has the potential to transform the landscape for scleroderma research.
Every gift we receive towards our Challenge will be matched, dollar for dollar through July 15th*. You can make a direct impact to accelerate vital research for scleroderma patients by making a gift today. Your support helps us take critical steps towards unlocking new treatments and, one day, a cure. Thanks to you, research is at the center of all we do.
*up to a max. of $75K
|
|
Dr. Paul Wolters - Inspired to Study SSc-ILD |
|
“One of the first patients I cared for with lung fibrosis had scleroderma. He progressed from being a healthy middle-aged man to succumbing to the disease within months. At the time, there was little understanding of the cause of lung fibrosis, and no known therapies for scleroderma-mediated lung fibrosis. It was in caring for this patient that I decided to dedicate my research program to understanding and developing therapies for lung fibrosis.
In collaboration with Gerlinde Wernig, I'm very excited to be able to use cutting-edge, single-cell technologies to study SSc-ILD, which will immensely improve our understanding of the disease." - Dr. Paul Wolters
|
|
Why #SayScleroderma for Scleroderma Awareness Month? |
|
Because not enough people know what scleroderma is or does.
Because lack of awareness causes delays in treatments and diagnosis.
This is why we launched #SayScleroderma for Scleroderma Awareness Month.
Throughout June, we shared stories from community members on our social media, and amplified the many creative ways more people came forward to spread awareness. Though June is coming to an end, spreading awareness doesn't stop. Join us and #SayScleroderma.
|
|
“Scleroderma has changed my life for the better and the worse simultaneously.”
|
|
“I do not want future generations to have this bombshell diagnosis dropped on them: “You have Scleroderma” and have no clue what that means for them.”
|
|
“I am still young and I really want a cure to be found.”
|
|
“People just aren’t aware of scleroderma. That’s why I’m very willing to tell my story.”
|
|
“To me the word scleroderma means fight like hell. Any meaning, latin or otherwise, just doesn’t matter.”
|
|
Treating Gastrointestinal Issues in Scleroderma |
|
"Researchers at the Johns Hopkins University School of Medicine analyzed the tolerability and benefit of linaclotide in scleroderma patients with refractory lower GI disease, followed at the Johns Hopkins Scleroderma Center between August 2012 and January 2019... Results show that low-dose treatment with linaclotide is effective and may be better tolerated, though some patients may require higher doses." - Scleroderma News
SRF-funded researchers Dr. Fred Wigley and Dr. Zsuzsanna McMahan are two of the authors on this paper.
|
|
Study Shows Online Intervention Improves Mental Health in Scleroderma Patients |
|
"People with a rare autoimmune disease, who likely experience more serious isolation during a global pandemic, saw their anxiety and depression improve after receiving online mental health intervention through an international study.
'COVID-19 isolation has had a very serious impact, especially on these scleroderma patients...,' said John Varga, M.D., a co-author of the study, chief of the Michigan Medicine Division of Rheumatology and associate director of the U-M Scleroderma Program. 'This shows that virtual intervention can be very effective in mitigating these mental health issues.'" - University of Michigan Health Lab Blog
|
|
CDC Guidelines on Covid-19 and Scleroderma |
|
Still unsure as to how to best protect yourself from Covid-19 while living with scleroderma? The CDC has guidelines for you. "If you have a condition or are taking medications that weaken your immune system, you may NOT be fully protected even if you are fully vaccinated," their website states. "Talk to your healthcare provider. Even after vaccination, you may need to continue taking all precautions." |
|
Grove Wine Bar raising Funds for Research |
|
Do you live in the Austin, TX area and want to help raise funds for scleroderma research? Stop by any of the Grove Wine Bar's four locations on Monday, June 28th for lunch or dinner, and 10% of net sales will be donated to the SRF.
Longtime Cure Crew member and Grove co-owner Beth is hosting this fundraiser for the SRF during Scleroderma Awareness Month in honor of her mother, Betty. She remembers her mom as a tough fighter. "I strongly believe that her 'I am bigger than Scleroderma' attitude helped her dance at my wedding and share so many precious moments with our daughter, Gianna," says Beth.
Thank you to Beth and her husband, Tony, for their 18 years of support by hosting golf fundraisers that have raised more than $350,000 for the SRF. We hope you will join them at the Grove Wine Bar this Monday!
|
|
We celebrate and recognize Cure Crew members such as Beth who have united with a shared belief in the power of research to help people living with scleroderma live longer, fuller lives and lead us closer to a cure.
Visit the SRF Cure Crew webpage to learn more and tell us how you will be a partner.
|
|
|
|
|
|
|
