The Scleroderma Research Foundation Monthly eNewsletter | |
Celebrating 30 Years of the Kosmach Cure Crew | |
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Dedication, commitment, and lifelong love–the Kosmach family embodies it all. Since 1995, they have poured their hearts into fundraising for scleroderma research in memory of their beloved mother, Joan Kosmach.
This year in March, their annual “Bet on a Cure” fundraiser marks a huge milestone: 30 years of supporting research! Over the past three decades, the family has collectively raised over $600,000 to date.
The Kosmach siblings have poured their passion into 30 years of fundraising.
You can read them share their story in their own words using the link below.
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Pictured: The Kosmach siblings and family at Bet on a Cure (top photo), Joan and William Kosmach, Kosmach family and Fright Night attendees (bottom photo) | |
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Katie and Nancy's Story
“My mom’s journey was difficult to wrap my head around,” Katie L. shares of her mother's experiences with scleroderma.
"I learned over time that there would be no quick fix or just one right answer. It became about acknowledging what her life and ailments consisted of at that time and figuring out how I could help,” she says.
For nearly a decade, her mother, Nancy, battled scleroderma—a journey that was as emotionally taxing as it was physically challenging.
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Melissa's Story
Melissa’s journey to a scleroderma diagnosis was anything but straightforward. It began in 2008 with Raynaud’s symptoms in her hands and feet, as well as chilblains and nodules on her fingers. While she sought care early, Melissa’s lab results appeared normal, leaving her without answers for nearly a decade.
“I saw many specialists over the years and often felt dismissed,” she shares. “There were times I believed others thought I was over-exaggerating my symptoms and the way I felt."
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Josh Helps Fund Scleroderma Research, One Glass Bag at a Time!
RAM Gallery recently hosted an incredible fundraiser featuring Josh Raiffe’s handblown glass purses, with 10% of proceeds donated to the Scleroderma Research Foundation.
"My mom has been living with scleroderma for decades, so I’ve seen the hardship it can cause," says Josh Raiffe, founder of Raiffe Glass. "Being able to donate to the SRF has really made her and I feel connected to the scleroderma community."
| Pictured: Josh and RAM Gallery owner, Megan | |
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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.
In 2024 alone, this passionate group of over 2,000 global scleroderma advocates spread awareness through countless posts and conversations and hosted events that raised more than $120,000.
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CONQUEST Recognized by FESCA 🌎 | |
The Federation of European Scleroderma Associations (FESCA), a coalition of patient organizations across Europe committed to improving the lives of people with scleroderma, recently featured the CONQUEST clinical trial platform on their social media channels. This acknowledgment from FESCA underscores CONQUEST’s global significance in advancing scleroderma research and highlights its far-reaching impact.
With 82 platform trial sites now open across the globe, CONQUEST aims to make a widespread impact on scleroderma research, with plans to enroll 430 patients in its first iteration.
"CONQUEST offers exciting opportunities to help accelerate treatments to patients and we’re particularly looking forward to the findings of CONQUEST’s current investigation on the safety and efficacy of two investigational products for interstitial lung disease associated with systemic sclerosis." says Sue Farrington, President at FESCA.
Launched in April 2024, CONQUEST was developed with input from partner biopharmaceutical companies to accelerate the development of scleroderma treatment options.
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Discover How the SRF Approaches Funding Scleroderma Research | |
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When it comes to funding research, our Scientific Advisory Board, made up of some of the world’s most honored and distinguished scientists, helps us ensure that investments are focused on the most promising research projects.
Each year, the advisors donate their time and expertise to review grant applications and guide funding decisions. A huge part of this process takes place during the annual SRF Science Workshop, a cornerstone of our research program. This two day meeting sparks collaboration and lively discussion among the advisors, funded researchers, outside experts, and new grant applicants—all working together to benefit people living with scleroderma.
Last year alone, we invested over $6.7 million to advance scleroderma research through funded grants, the CONQUER Registry, and the CONQUEST platform clinical trial. These efforts are driving progress in understanding the disease, accelerating the development of improved therapies, and ultimately working toward a cure.
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Celebrating Bob Saget and His Sister, Gay, in the Fight Against Scleroderma | |
On January 9, our hearts were heavy as we held two extraordinary people close in our thoughts—Bob Saget and his sister, Gay on what would have marked Gay’s 78th birthday and three years since we - and the world -lost the incomparable Bob Saget.
Bob’s unwavering dedication to our mission was deeply rooted in his love for his sister and his desire to shine a spotlight on scleroderma. For 30 years, he was a passionate advocate, raising national awareness and making countless scleroderma patients feel seen, heard, and supported. His relentless efforts turned hope into action and gave strength to those who needed it most.
Though Bob and Gay are profoundly missed, their enduring legacy continues to guide and inspire us. We remain steadfast in our commitment to ending scleroderma through the Bob Saget Memorial Scleroderma Research Fund. This fund directly supports the SRF’s groundbreaking research initiatives, ensuring that his dream of finding a cure lives on.
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Coming Up: February Awareness Campaigns | |
Join us for Raynaud's Awareness Month! 🧤 | |
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Nearly 90% of people living with scleroderma face the challenges of Raynaud’s phenomenon—a condition that causes episodes of reduced blood flow to fingers and toes, often triggered by cold or stress.
This February, join us in promoting understanding of Raynaud's, scleroderma, and research that is advancing toward improved therapies for these challenging conditions.
How you can get involved:
🔹 Share your story: How do your experiences with Raynaud's or scleroderma impact your life? How do you navigate a flare-up or educate others about these conditions?
🔹 Post on social media: Share the facts! Use #RaynaudsAwareness and tag us @SRFCure to spread awareness about the signs, symptoms, and the need for urgent research.
🔹 Get involved: Stay tuned for details about our upcoming raffle and other exciting ways to participate!
Every voice, story, and post makes a difference in the lives of those affected by Raynaud's and scleroderma. Let’s make this February a month of action and awareness!
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Mark Your Calendars for Rare Disease Day!
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As a rare disease, scleroderma remains largely unknown, and lack of awareness causes delays in scleroderma treatments and diagnoses.
For this reason, we're gearing up for Rare Disease Day, an awareness day taking place on February 28 organized by a consortium of 66 global patient organization partners focused on shining a light on rare conditions such as scleroderma.
Here are some exciting opportunities to get involved:
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Rare Disease Day 2025 Meeting
Join the free FDA-NIH event on February 27–28 (in-person or virtually). Highlights include inspiring panels, rare disease stories, and groundbreaking research collaborations.
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#LightUpforRare
Be part of the Global Chain of Lights! On February 28, light up your home with garlands, disco lights, or any creative decorations! Snap a pic and post it using #RareDiseaseDay.
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And be sure to check out the Rare Disease Day social media toolkit! It contains ready-to-use graphics, messaging, and tips to help raise awareness about scleroderma and other rare diseases. | |
Start 2025 Off Right: Plan for the Future with FreeWill | |
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As we begin the new year, we invite you to consider a simple act of care for yourself and your loved ones, that can also support those living with scleroderma: creating your will.
The SRF partners with FreeWill and offers its services at no cost to the scleroderma community, so you can make a will and find peace of mind for the year ahead. It’s completely free to use and takes as little as 20 minutes to do.
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Help take care of your family, your finances, and the causes you care about by using this free resource to get started!
If you’ve already included the SRF in your estate plans, please let us know so we can recognize you as a member of the Sharon Monsky Legacy Society.
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Connect with the SRF on Threads! | |
The Scleroderma Research Foundation is now on Threads. Follow us @SRFCure for the latest updates on groundbreaking research, inspiring patient stories, and ways to get involved. Join the conversation and help raise awareness. | |
Scleroderma Research in the News | |
Check out the latest research updates from the scientific 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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