| eNews: August Edition |
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Individual registration is now open for Cool Comedy • Hot Cuisine 2021, benefitting the Scleroderma Research Foundation! When you purchase a ticket, you directly support the SRF's research programs.
With SRF Board members Bob Saget and Susan Feniger as your hosts for the evening, this year's virtual event will be better than ever. There'll be a new lineup of world-class comedians and musicians, and new features to keep things fresh and fun—all while helping drive science forward.
It's a night of laughter & inspiration you won't forget,
on Sunday, October 17th, 2021 at 8 pm ET/ 5 pm PT.
Register today and help us end scleroderma together.
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Thank you for rising to the Challenge! |
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This summer, SRF supporters helped us raise a total of $175,000 through our annual Research Challenge. Vital donor support makes our research progress possible, including projects like the groundbreaking Multi-omic Profiling of Interstitial Lung Disease (ILD) in Systemic Sclerosis study which was highlighted in the appeal campaign. We're deeply grateful to all those who supported the Challenge - thank you for helping to accelerate the pace of scleroderma research. |
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The 2020 SRF Annual Report |
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The Scleroderma Research Foundation’s 2020 Annual Report is now available online. This report demonstrates the many ways in which you partnered with us to drive our mission forward during a global pandemic.
Read how you helped us embrace innovation to advance research progress.
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Board Member and Actress Regina Hall Talks Scleroderma Awareness |
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"I learned about scleroderma when my mom had a mild case...Many people are misdiagnosed for years and there is not a lot of awareness or research funding."
SRF Board Member Regina Hall talks about raising awareness for scleroderma, living stress-free, and her new show, Nine Perfect Strangers, in this interview with Parade. Thank you, Regina, for sharing what this disease is and does to such a broad audience.
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Juliana's Scleroderma Advocacy |
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Scleroderma advocacy began with Juliana’s diagnosis. “The minute I found out about my rare conditions, I started advocating for my rights and then founded 10 regional groups in Brazil.”
She’s taken on being an advocate while managing scleroderma's effects, not just physically but also personally. Read more about how she’s managed these struggles and what drives her advocacy.
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Why Research Matters to Rae |
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“I really believe in research. Participating allows me as a young, African-American female to represent those who have typically gone underrepresented in medical research,” says Rae.
She’s a medical researcher herself, a self-described nurturer and dreamer–and someone who lives with scleroderma. Rae talks about her journey to being diagnosed, how scleroderma has changed her life, and why research matters to her.
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Research Developments In the News |
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CTRP9 Protein Levels May Be Biomarker of Lung Disease Severity |
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"High levels of a protein known as CTRP9 appear to indicate worsening lung function in patients with systemic scleroderma (SSc), according to a recent study. The discovery suggests that CTRP9 may be a useful biomarker for the loss of lung function in SSc.
Such biomarkers are sorely needed, researchers said, given that diseases that cause scarring of lung tissue — known as interstitial lung diseases or ILD — are linked to poor outcomes for people with SSc." - Scleroderma News
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Review Finds that Peripheral Nerve Damage is Common Within First 10 Years |
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"Nearly 30% of scleroderma patients have nerve damage outside of the brain and spinal cord — called peripheral neuropathy — and it most frequently appears in the first decade after disease onset, according to a review study." - Scleroderma News
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Did You Know August Is Make-a-Will Month? |
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Supporters like you are at the core of everything we do at the SRF. You make it possible for us to drive scientific research forward, helping to secure a future free from scleroderma.
That's why, during National Make-a-Will month, we have a gift to say thank you: an online tool to create a legally valid will, so you can take care of the people you love and the causes you care about most. This resource is 100% FREE, whether you choose to include a planned gift to the SRF or not.
Learn more, and get started writing or updating your will online. Or contact Cori Fay Traub, SRF Director of Philanthropy, at 415-834-9444, ext. 2 for more information—because now is the perfect time to create a legacy that is meaningful to you.
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50% of people with limited or diffuse scleroderma are familiar with this symptom: skin ulcers. They most often appear at the tips of fingers (digital ulcers). They may extend under the nails or they may appear on the joints at pressure points like elbows when the skin is stretched too tight. Ulcers may also occur on the legs or other parts of the body following minor trauma such as a bruise.
Learn more about the prevention and treatment of skin ulcers, along with other scleroderma complications
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Why Melissa Participates in Research |
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Participating in research is crucial to finding a cure for scleroderma. SRF Cure Crew member & scleroderma advocate, Melissa, talks about just this in a new 23andMe blog post. She participated in 23andMe's systemic sclerosis study "because I just want to be able to help in whatever way I possibly can. This disease isn’t going to just go away."
Melissa, thank you for being open about your experiences living with scleroderma. And thank you for sharing why getting involved with research matters.
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Cure Crew members make a real impact on the lives of people living with scleroderma. These dedicated volunteers help to raise awareness, organize innovative fundraising events, and share a belief in the power of research to find a cure.
Visit the SRF Cure Crew webpage to learn more, or tell us how you'll get involved to make a difference!
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