The Scleroderma Research Foundation Monthly eNewsletter | |
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Coming Soon: Cool Comedy • Hot Cuisine
Tuesday, Oct. 29 • Fairmont Century Plaza, Los Angeles
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The countdown is on! Cool Comedy • Hot Cuisine is just around the corner. This event is the SRF’s largest annual fundraiser, helping to raise critical funds for research and awareness about scleroderma.
Top performers for the night include John Mayer and Jeff Ross, who will be honored with this year's Bob Saget Legacy Award. They'll be joined by a lineup of hilarious comedians, including Whitney Cummings, Alex Edelman, Chris Hardwick, and Jim Jefferies, who are all generously contributing their time and talents to support this cause.
Every dollar raised from this event will go directly to the Scleroderma Research Foundation’s groundbreaking research and educational initiatives.
It's not too late to register for CCHC, but it will be soon—so join us for what's sure to be an unforgettable night! Become a sponsor, purchase tickets, or make a donation today, and help us move closer to a future without scleroderma.
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November is PAH Awareness Month, a time to shine a light on Pulmonary Arterial Hypertension (PAH), a serious condition that affects 8% to 17% of people with scleroderma.
Scleroderma can cause scar tissue in the lungs and thickening in the walls of blood vessels that carry blood to and from the heart to the lungs. When the blood is less able to flow smoothly it can lead to PAH. This condition often goes undiagnosed because its early symptoms can be subtle or mistaken for other issues, like asthma or general fatigue.
For those with scleroderma, the risk of developing PAH is higher, making regular health screenings essential. Your doctor can play a key role in monitoring your heart and lung health to catch any signs of PAH as early as possible. Early diagnosis opens the door to effective treatment options that can make a real difference.
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Special thanks to our PAH Awareness Month sponsor, Janssen Pharmaceutical Companies of Johnson & Johnson, for their support in raising awareness. |
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October 23rd marks what would have been the 71st birthday of Sharon Monsky, the founder of the Scleroderma Research Foundation. Sharon launched the SRF in 1987 with a vision—knowing that although a cure might not come during her lifetime, the key to finding one was through investing in innovative research. Though Sharon passed away from complications of scleroderma in 2002, her mission and vision live on today.
Her unwavering dedication and her gift for rallying others to the cause have propelled the SRF to become the nation’s leading nonprofit funder of scleroderma research. Sharon's belief in the power of scientific discovery remains at the center of all we do at the SRF.
We carry Sharon's legacy with us every step of the way, as we continue to advance research toward improved therapies, and one day a cure for scleroderma.
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Caryn's Planned Giving Journey | |
Did you know that October 21st - 27th, 2024 is National Estate Planning Awareness Week? This week offers a unique opportunity to have surprisingly uplifting conversations with your family about estate planning and planned giving that can help you enter the upcoming holiday season with peace of mind and purpose.
For Caryn I. (dx 2023) and her husband Glenn C., making a planned gift to the Scleroderma Research Foundation was more than just a financial decision—it was an investment in hope for a future without scleroderma.
"I chose to make a planned gift to the SRF as I am hopeful for the research that they are doing to progress further along," she says. "Research projects, clinical trials, collaborative efforts, etc. all combined will be very impactful to achieve the ultimate end goal of finding a cure."
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Use this free will-writing tool below to take care of your loved ones and support the causes closest to you. | |
2024 Patient Forum Highlight: Scleroderma & Cancer | |
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Could there be a link between cancer and scleroderma? Hear what Dr. Ami Shah has to say in this SRF Patient Forum clip.
Dr. Ami Shah (Professor of Medicine and Director of the Division of Rheumatology, Johns Hopkins University School of Medicine) examines cancer screening recommendations for individuals with scleroderma. Her session covers reviews data linking cancer to scleroderma, discusses implications for cancer screening in patients with a recent scleroderma diagnosis, and describes the challenges in cancer care in patients with scleroderma.
To learn more about cancer screening & therapy for patients with scleroderma, check out the full session featuring Dr. Shah on our YouTube channel.
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Join our Advocacy Community: The Cure Crew | |
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The Scleroderma Research Foundation’s Cure Crew is a grassroots volunteer program that raises awareness about scleroderma and funds to support the SRF’s research.
Cure Crew members around the world are united by a shared belief in the power of research to help people with scleroderma live longer, fuller lives, and lead us closer to a cure.
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Sofia's Story
"By holding this fundraiser, I hope that others are inspired to learn more about scleroderma and about people within the community," says Sofia Q., (dx 2006) who recently hosted a Facebook birthday fundraiser in support of the Scleroderma Research Foundation. "The community deserves visibility and a cure."
"My journey fighting scleroderma started in elementary school, and continues to be a significant part of my life," Sofia explains.
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Erion's Story
"As an athlete, you push through pain, so I didn’t think too much of it at first," Erion M. (dx 2008) says of his initial scleroderma symptoms.
In 2006, Erion was a collegiate basketball player at Southern Oregon University, when he first began noticing that something was wrong.
"I was playing back-to-back games, and I started feeling more exhausted than usual," he recalls. "My endurance dropped, and my hands began to swell."
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Remembering SRF Advocate Sandy Kosmach | |
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At this time, we are fondly remembering our dear friend Sandy Kosmach Ribich, a devoted advocate and longtime supporter of the SRF's mission to end scleroderma. Sandy, who passed away in June, leaves behind a profound legacy of love, generosity, and unwavering dedication to advancing scleroderma research.
For more than three decades, Sandy had been a passionate champion in the fight against this challenging disease, standing alongside her husband Ray, daughter Alanna, and sisters Diane, Annette, and Joni, and other family members, collectively the "Kosmach Cure Crew".
Together, the Kosmach family has worked tirelessly to raise awareness and funds in memory of their mother, Joan Kosmach, who passed away in 1995 due to complications from diffuse systemic scleroderma.
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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 | |
Research is at the center of all we do to find a cure. | |
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