The Scleroderma Research Foundation Monthly eNewsletter | |
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Cool Comedy • Hot Cuisine 2024
Raises More than $1.1 Million for Research!
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This year's Cool Comedy • Hot Cuisine (CCHC) on October 29th was a night to remember!
Together, we celebrated raising awareness and critical funds for scleroderma research and presented the Bob Saget Legacy Award to John Mayer and Jeff Ross. These two dedicated friends of Bob’s have generously donated their time and talents to support CCHC and the SRF for decades.
The evening was a perfect blend of love, laughter, and hope, thanks to our incredible host Jeff Ross, and a stellar lineup of comedians, including Whitney Cummings, Alex Edelman, Chris Hardwick, and Jim Jefferies. The night ended with a heartwarming performance by John Mayer, who played a selection of his timeless classics. We’re deeply grateful to everyone who made this extraordinary event possible.
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Advancing Research: CONQUEST Design Manuscript Published in the Journal of Scleroderma and Related Disorders! | |
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We are pleased to announce a new publication in the Journal of Scleroderma and Related Disorders featuring the innovative design of the CONQUEST clinical trial.
The article details key features of CONQUEST, including its ability to test multiple investigational products in parallel and sequentially, with a shared placebo group that reduces the number of patients needed.
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Pictured: CONQUER Research Coordinators & Data Coordinating Center Team (above), and CONQUEST Platform Trial Leadership Team (below) | |
CONQUEST & CONQUER Convenings at the 2024 American College of Rheumatology (ACR) Conference | |
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Members of the SRF leadership team connected with physicians, health professionals, and scientists from around the globe this month at the American College of Rheumatology's Convergence in Washington DC. This conference is the premier educational event for those who research or treat rheumatic and musculoskeletal diseases.
In addition to participating in multiple days of conference sessions, the SRF also hosted convening for Principal Investigators (PIs) and Research Coordinators (RCs) involved in two of our priority research projects:
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Leaders of the SRF CONQUEST platform clinical trial for SSc-ILD conducted one-on-one meetings throughout the week. They hosted networking receptions to share progress updates, facilitate peer-sourced support, and discuss ways to advance the progress of this groundbreaking platform trial. For more information about CONQUEST investigational medications or participation criteria visit https://www.conquestssc-trial.org/
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CONQUER Patient Registry PIs and RCs from 19 participating sites (including 2 new sites just added in the past month) participated in 2 back-to-back meetings focused on sharing best practices for data quality, status updates of published manuscripts using CONQUER Data, innovative approaches to participant engagement and more.
We were invigorated by the insightful discussions and grateful to collaborate with such dedicated colleagues as we work together to end scleroderma.
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Cure Crew in the Community | |
Earlier this month, Cure Crew members Beth L. and Lisa D. brought the second annual Picklepalooza tournament to Austin, TX hitting the courts and raising over $23k for scleroderma research! | |
For the 9th year in a row, the Connors-Zini family, recently hosted their Annual "Best Medicine" Comedy Show on October 24th in conjunction with Live Snakes Comedy, raising over $26,500 for a cure. | |
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This month, Cure Crew member Jess M. hosted her third annual fundraiser through her knife sharpening business, Knife Flight.
For every sale she made from November 1st through 15th, she donated 15% of the proceeds to the SRF, raising critical funds for scleroderma research.
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Cure Crew member Molly S. donated the proceeds from her 10th annual 2-night concert, "Dumb Diseases", to the SRF.
For the past two years, she has dedicated her fundraiser to scleroderma research in honor of her best friend, Jess (of Knife Flight), who lives with scleroderma.
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The Scleroderma Research Foundation’s Cure Crew is a passionate group of volunteers united by a common goal: advancing research to help people with scleroderma live longer, fuller lives and bring us closer to a cure.
Cure Crew members are powerful advocates for scleroderma awareness and have raised significant funds to support groundbreaking research. Getting involved is simple—and your participation makes a real difference. Learn more and join this passionate advocacy community today!
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PAH Awareness Month: Nola's Story | |
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November is Pulmonary Arterial Hypertension (PAH) Awareness Month. To wrap up the month, we are featuring Nola, who candidly shares her journey living with both scleroderma and PAH in this video.
“Being told you have not one, but two rare diseases is difficult,” she says. “I had no idea what either one of these illnesses was. Awareness of these diseases helps get better research and can give you a better quality of life.”
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"You are supporting patients like me in the hopes that one day this disease will cease to exist."
- Greg C., dx 2017 (pictured above)
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Together, we’re making big strides toward our goal of ending scleroderma. We wouldn’t have come this far if it weren’t for our dedicated scleroderma community. We are all in, thanks to YOU.
As we continue to fund life-changing research, your support is vital and will translate into meaningful research progress for people like Greg, and all those living with scleroderma.
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P.S. Your GivingTuesday (Dec. 3) gift will double in impact, up to $25k! Don't want to wait? Give today! |
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One Small Way Federal Employees and Retirees Can Make a Big Difference | |
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If you’re looking for another way to help advance scleroderma research, the Combined Federal Campaign (CFC) offers a trusted and convenient way for federal employees and retirees to contribute to the SRF through payroll deduction or retirement annuity.
Getting started is easy!
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Visit the CFC Donor Pledge System to create an account.
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Search for the SRF using our CFC number: #11847.
- Make your pledge and help accelerate progress toward a cure!
But please don’t wait—the deadline to make a payroll or IRA gift to the SRF through CFC is January 15, 2025.
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Scleroderma Research in the News | |
Check out the latest research updates from the wider community from this month. While we didn't fund these projects, we're encouraged to see a continued focus on understanding scleroderma. | |
In Case You Missed it: Recent SRF Highlights | |
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This Thanksgiving, We're Grateful for You 🧡
As we think of all the things we're thankful for this week, you'll be at the top of the list. Thank you for being part of the search for a cure. Together, we’re making a difference. Wishing everyone a warm and wonderful holiday!
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Research is at the center of all we do to find a cure. | |
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