You're invited to the SRF's first-ever "Collaborating For a Cure," an online half-day patient forum for people living with scleroderma and those who care about them. The event will be held on June 1st to kick off Scleroderma Awareness Month and feature leaders from the scleroderma scientific and medical community. They will host educational sessions on symptom management, new developments in research, and your vital role in helping to find a cure for this rare autoimmune disease.
There is no cost to register, so please join us in collaborating for a cure! Mark your calendar for Wednesday, June 1, 2022 (time to be announced), and stay tuned for registration information—we can't wait to see you "there” virtually.
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New Partnership: Rare Disease Diversity Coalition |
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April is National Minority Health Month. It's an opportunity to raise awareness and encourage advocacy about how health disparities can affect people from racial and ethnic minority groups, including those who live with rare diseases like scleroderma.
And so, we're excited to share that the SRF has become an official member of the Rare Disease Diversity Coalition (RDDC)! The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.
We look forward to collaborating with other rare disease organizations so that we can better serve our diverse communities as we work towards earlier diagnoses, better treatments, and, ultimately, a cure for scleroderma .
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Investigating Scleroderma in Children |
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Anyone can be diagnosed with scleroderma, including children. Even though scleroderma usually manifests between the ages of 30 and 50, it affects approximately three out of every one million children, with an average onset age of 8 years. These children face a life-long risk for dangerous complications from the inflammation and fibrosis caused by scleroderma.
This is why the SRF funds juvenile-onset studies like the "Identification of Novel Pathogenic Genes in Juvenile Systemic Sclerosis" project. Learn more about why these discoveries matter to people with scleroderma of all ages.
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Where You Can Participate in CONQUER |
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In 2018, the SRF launched CONQUER (COllaborative, National Quality and Efficacy Registry), a first-of-its-kind nationwide, longitudinal registry of scleroderma patients. For those who live with scleroderma, participating in CONQUER is an incredibly meaningful way to advance research and help end this disease. Participants contribute to the database through routine clinical visits at centers in the CONQUER consortium on a semi-annual basis, where your clinician will collect a blood sample and clinical data.
So where are participating centers in the U.S.? Currently, they are in California, Illinois, Maryland, Massachusetts, Michigan, Minnesota, New York, Pennsylvania, South Carolina, Texas, Tennessee, Utah, and Washington, D.C. This includes the three new centers that have joined the CONQUER consortium starting this year—the Mayo Clinic in Minnesota, University of California, Los Angeles, and Vanderbilt University Medical Center.
If you’re interested in enrolling in the CONQUER registry, visit our website to review your eligibility and find contact information for each center.
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Doris's Journey with Scleroderma |
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Doris was diagnosed with scleroderma at age 46 and was given only 2-5 years to live. Now, she’s 62 years old. “I thank God every day for blessing me to see my daughter grow up,” she says.
Read more about the difficulties Doris has faced, and how she approaches these challenges with hope.
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How Anna’s Family Remembers Their Beloved Sister and Daughter |
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Anna loved her family, friends, and dancing. Though she was diagnosed with scleroderma at age 10, she lived the next three years of her life with confidence. “She wanted to pursue acting or work in rheumatology research when she was older,” her mother Amber says.
But at only 13 years old, Anna became severely ill from COVID-19. “Our entire world changed July 10th, 2020,” Amber shares. “Our fairly healthy kid who fought off the flu every year, sometimes twice with no problem, was gone within a matter of days.”
Through the love of her family, Anna will continue to make a difference, though her days were cut tragically short. Read more about how her family formed the Anna Belle Carter Memorial Foundation to help families with scleroderma, and why they value the search for a cure.
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Support Research While Celebrating Mother's Day |
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Looking for a Mother's day gift or other upcoming celebrations? You can help fund scleroderma research by shopping through AmazonSmile! AmazonSmile offers the same products at the same prices as Amazon.com—but 0.5% of the purchase price of all eligible products is donated to the charitable organization of your choice.
On your computer, go to smile.amazon.com and choose the SRF as your designated charity. Or, on your phone app, click menu, then settings, then AmazonSmile. When you shop, AmazonSmile gives to the Scleroderma Research Foundation.
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