The Scleroderma Research Foundation Monthly eNewsletter

We mistakenly sent an incomplete version of this newsletter earlier today—here's the updated July newsletter for you.

eNews: July Edition

Announcing the First-Ever Recipient of the Bob Saget Legacy Award

On July 11th, longtime SRF supporters Kelly Rizzo, Jeff Ross, and John Stamos were on hand to make a big announcement at the New York Comedy Festival press conference: Caroline Hirsch, founder and producer of the New York Comedy Festival, will receive the first-ever Bob Saget Legacy Award at this year's Cool Comedy • Hot Cuisine (CCHC) event in NYC on November 8, 2023.

The SRF lovingly established this new award in Bob’s honor to be presented to individuals who followed in his footsteps by going above and beyond to help shine a spotlight on scleroderma and raise funds to find a cure. “It’s truly fitting that the very first award would be presented to Caroline Hirsch," said Rizzo. "As a dear friend of Bob’s, Caroline helped him to raise funds and awareness for scleroderma research by generously hosting CCHC at her iconic comedy club for so many years.”

The SRF is honored that Kelly Rizzo (CCHC co-chair), Jeff Ross (CCHC Host), and John Stamos could be the ones to announce this news and help us bring CCHC back to New York – held this year in a new location at the Edison Ballroom. In addition to honoring Caroline, the event will once again be a special tribute to our beloved Bob Saget. 

Many of his talented friends who are some of the world’s greatest comedians and performing artists will be on hand to help us honor Bob and Caroline, so it will be an absolutely unforgettable event.

New Webinar Series to reach the Broader Research Community

Last month, we hosted the first webinar in our Spotlight Series: Breakthroughs in Scleroderma Research for the broader research community.

The Spotlight Series features leading researchers and clinicians as they present present novel scientific insights that shed light on scleroderma research to an audience of their peers. In this first webinar, Antony Rosen, MB ChB, BSc(Hons), Professor of Medicine and Vice Dean for Research at Johns Hopkins University, shared his presentation “Scleroderma and Cancer: An Example of Immunoediting?”

Dr. Rosen shared his insights on how the immune response to cancer may shape autoimmunity, followed by live Q&A. Learn more about how we're connecting researchers with researchers through this series on our website.

2023 Research Challenge: Why Cynthia Participates in CONQUER

As our annual Research Challenge highlighting the CONQUER Registry continues this month, we asked Cynthia, dx 2021, to share her story about why she enrolled in the registry and supports participation in research:

"I lost a lot of me." Cynthia explained, simply. It's just one of many reasons why she wants to participate in research that accelerates progress towards a cure. When Cynthia's doctor asked her to enroll in CONQUER, the nation's first longitudinal registry launched by the SRF to track scleroderma patient data over time, she said yes immediately. "I wanted to be involved in something to find out more about scleroderma," she says. 

Cynthia knows her participation in research is as critical as funding it. "All that we do in research takes money," she says. "We all have to give something so we can get a cure for this disease. Scleroderma may not be happening to you in your life, but what about your children and grandchildren?" Cynthia asks. "I may not be here to have the cure, but it is about all those who come after you. It takes a whole village to help find a cure for scleroderma. It takes all of us."



Will you join Cynthia and others like her by supporting innovative research like the CONQUER registry?

Connecting with Community at the National Scleroderma Conference

Last week, Joanne Gold, the SRF’s Executive Director, and Gloria Blecha, our Senior Director of Community Outreach & Education, had the opportunity to attend the National Scleroderma Conference in Orlando, Florida.

At the conference, the Scleroderma Research Foundation promoted active participation in research among the scleroderma community. By highlighting the CONQUER Registry and encouraging involvement in research initiatives, we are helping investigators to better understand this complex disease, which will improve the lives of those affected by it and one day find a cure.



“We were truly grateful for the chance to connect face-to-face with those who are living with this disease, as well their families and caregivers,” says Joanne. “Their stories were both educational and inspirational, and we look forward to continuing to support the scleroderma community as we work together to advance research towards a cure.”

Participate in a global scleroderma survey to advance research!

The Systemic Sclerosis Interstitial Lung Disease Progression (SILPRO) team at the Department of Rheumatology at University Hospital Zurich, University of Zurich, is conducting a study to explore the priorities of patients who suffer from systemic sclerosis with lung involvement.

Led by Dr. Cosimo Bruni, this distinguished group of investigators won the prestigious Betty Z. Benedict award in 2021, offered jointly by the Scleroderma Research Foundation and the Scleroderma Clinical Trials Consortium (SCTC) to support research projects in the field of systemic sclerosis.

With this new survey, they seek to investigate the significance of specific events (outcomes) related to interstitial lung disease associated with systemic sclerosis (SSc-ILD) from the perspective of patients. Understanding patients' perceptions of their health and experiences is crucial for delivering exceptional patient-centered care.

Patient participation in the survey is completely anonymous and will take approximately 10 minutes to complete. If this applies to you, please participate in research by filling out the survey today.

Raising Awareness through Documentary Film

When Ken first studied Swiss-German artist Paul Klee in art school, he had no idea that he would be diagnosed in 2000 with the same disease Klee suffered from: scleroderma.

“After learning that Klee also suffered from the same progressive form, diffuse cutaneous systemic sclerosis, I became really inspired by how it propelled his creativity,” Ken says. “Often feeling powerless to the disease myself, I felt compelled to share his story—a scleroderma awareness piece disguised as an art film.”

And so, Ken created “Angel Applicant,” a documentary on both Ken’s and Klee’s experiences with scleroderma. It’s already won a prestigious prize—the SXSW Grand Jury Prize for Best Documentary feature.



Read our full interview with Ken online, and view an excerpt from the film.

Research is at the center of all we do to find a cure.

Ways to Support Research

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