The Scleroderma Research Foundation (SRF) Monthly eNewsletter | | |
Register Now for the 2025 SRF Virtual Patient Forum
Registration is now open for Collaborating for a Cure—the SRF's FREE online Patient Forum, taking place online on Monday, June 2, 2025, at 9:00 AM PT / 12:00 PM ET.
Join us in kicking off #SclerodermaAwarenessMonth with this half-day event, designed for people living with scleroderma and those who care about them. It’s free to attend—just register to save your spot!
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Advancing Scleroderma: The 2025 SRF Science Workshop
“The networking that goes on between the researchers is pushing the envelope for science. The more we push forward with research, the more answers we will get.”
— SRF-funded researcher Dr. Kathryn Torok (Pittsburgh Children's Hospital, pictured above)
| On March 28-29, the SRF Annual Science Workshop brought together top researchers across the country to share knowledge and accelerate progress in scleroderma research. Each year, this workshop serves as a cornerstone of our research program, fostering collaboration and innovation. |
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Remembering SRF Board Member Bob Saget on His Birthday
May 17 is Bob Saget’s birthday—a day to remember his heart, his humor, and his incredible dedication to the scleroderma community. After losing his sister to the disease in 1994, he poured his time, talent, and love into raising awareness and funds for the SRF. For nearly 30 years, he was not just a passionate advocate, but a cherished part of the community and a devoted member on the SRF Board.
On what would have been his 69th birthday, we remember Bob and the incredible difference he made in the search for a cure. If you’d like to honor his legacy, consider creating a Facebook fundraiser to support the research he cared so deeply about.
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It’s Game Time: Carl Mayer Fundraises for Bob's Birthday
Carl Mayer (@carlwmayer) is bringing back the laughs and the love this May 11th with a brand-new edition of his Instagram Live sensation, the #15DollarGameShow in celebration of Bob Saget’s birthday and in support of scleroderma research.
“While I’m driven by wanting to honor his memory,” Carl says, “it also sort of feels like he and I are teamed up on this."
Stay tuned for the information, grab your trivia-loving friends, and join Carl live to celebrate Bob’s birthday the best way we know how—by fueling progress in scleroderma research with laughter, generosity, and heart.
| | Pictured: Cure Crew members Josie and Evie L. | | You Make Progress Possible: Celebrating Our Cure Crew and All Who Volunteer for a Cure | | |
April is National Volunteer Month, and we’re taking this opportunity to recognize the incredible members of the scleroderma community who give their time, talents, and passion to help move research forward.
At the SRF, we’re especially grateful for our Cure Crew—a grassroots network of volunteers committed to raising awareness and funds to accelerate progress toward a cure.
Whether you’re sharing your story, hosting an event, or simply spreading the word, you are a critical part of our progress—and every action you take helps bring us closer to a world without scleroderma.
Check out the upcoming events below to see how Cure Crew members and volunteers across the country are making an impact in their own communities.
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Scare Out Scleroderma
Join the Kosmach family and Cape Cod Paranormal Crew on Saturday, May 31, at the historic Crosby Mansion for a spooky afternoon of ghost hunting, tarot and oracle readings, and more—all to benefit the SRF.
Over the past 30 years, the Kosmach Cure Crew has raised more than $600,000 for research, in honor of their mother who passed from scleroderma in 1995.
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Golfing for a Cure
The third annual golf tournament, hosted by Ally’s Allies, tees off on Monday, August 25— and it’s set to be an unforgettable day!
After raising over $23,000 last year, Ally (dx 2022), her mom Linda, and their incredible community are back to raise awareness, share her story, and drive progress through raising funds for research.
| | Pictured: The Green Family (Heather, second from left, and Anna, fourth from left) | | |
Anna’s Scleroderma Journey Inspires a First-of-Its-Kind Weekend Camp
Anna G. (dx 2019) was just seven years old when she began displaying subtle but concerning symptoms.
“The most challenging part of navigating Anna’s diagnosis is not really knowing how the disease will manifest or if it will progress,” says her mother, Heather.
Together, Heather and four other moms began planning what will become the first-ever Scleroderma Family Weekend, launching this upcoming Memorial Day weekend in partnership with The Painted Turtle camp in Lake Hughes, California. While the camp is a new and exciting project, for Heather, it’s always been about something deeper: fostering a sense of belonging.
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Welcoming Dan Schimberg to the SRF Board of Directors
National Volunteer Month wouldn’t be compete without recognizing some of our most dedicated volunteers: the SRF Board of Directors. This month we’re honored to recognize our newest Board member, Dan Schimberg, who joined the SRF Board earlier this year.
As president of Uptown Rental Properties in Cincinnati, Dan brings decades of deep strategic and operational expertise to the Board. He also brings his personal experience of having a family member who is living with scleroderma.
“The reason I have decided to invest my limited resources of time and money to SRF,” Dan shares, “is the organization’s passion to facilitate the development of a cure; along with their integrity of making sure every dollar donated is used as efficiently as possible.”
We’re grateful to have his leadership and dedication as we continue driving progress toward a cure.
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SRF Board Member Regina Hall to Receive Honorary Doctorate from Fordham University
We're also proud to recognize SRF Board Member and award-winning actress Regina Hall, who will return to her Alma Mater, Fordham University next month to receive an honorary doctorate of fine arts and deliver the Class of 2025 commencement address.
She is being honored not only for her career, but also for her commitment to social justice and advocacy—including her dedication to advancing research through the SRF.
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Define Your Legacy—For Free
Planning for the future can be simple and meaningful. The SRF has partnered with FreeWill to offer a free, secure way to create your legal will.
If you choose to include the SRF, your legacy will help fund life-changing research and move us closer to a cure. You’ll also be welcomed into our Sharon Monsky Legacy Society in recognition of your lasting impact.
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Help Improve Understanding of Rare Diseases: Participate in the Living Rare Study
The Living Rare Study, led by the National Organization for Rare Disorders (NORD), is the first long-term research effort designed to better understand what it’s like to live with a rare disease.
It’s open to people in the U.S. who have—or suspect they have—a rare disease, as well as caregivers. By participating, you’ll help build a stronger foundation for future breakthroughs in care, access, and support. If you’re living with a rare disease or care for someone who is, consider joining the study today.
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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. | | News Update: U.S. Scientific Community | | In Case You Missed it: Recent SRF Highlights | | Research is at the center of all we do to find a cure. | | Know someone who might be interested in this information? Forward this newsletter to them! You can also encourage your network to sign up for our emails too. | | | | |
