The Scleroderma Research Foundation Monthly eNewsletter

eNews: March Edition

Mark Your Calendar: The Annual SRF Patient Forum Is Coming Soon!

Save the date: the Scleroderma Research Foundation (SRF) Patient Forum, Collaborating for a Cure, will take place on Monday, June 2, 2025! This FREE event kicks off Scleroderma Awareness Month with webinars on the latest in research, treatments, and disease management.



Don't miss this free virtual event designed for patients, caregivers, and scleroderma advocates! Stay tuned—session topics and registration details are coming soon.

Can't wait until June 2? Catch up on all of last year's informative sessions on our YouTube channel.

Building Global Partnerships: The CONQUEST Clinical Trial Team Heads to Argentina

Members of the CONQUEST team recently traveled to Buenos Aires, collaborating with dedicated physicians and research staff to provide comprehensive training on the study’s design and objectives—helping expand this global effort to improve treatments for scleroderma.

CONQUEST is a global clinical trial created by the SRF to accelerate the development of potential new treatments for scleroderma.

Through its growing network of scleroderma treatment centers worldwide, the first iteration of CONQUEST is focused on improving therapies for people living with systemic sclerosis associated interstitial lung disease (SSc-ILD).

Want to know if you qualify to get involved with CONQUEST? Take the new pre-screener survey. To access the survey, visit the CONQUEST page on the SRF website, and click "Learn More about enrolling in CONQUEST." From there, click "See if I May Qualify" to take the pre-screener and determine if CONQUEST is an option for you.

Explore Your Clinical Trial Options with SRF Carebox Connect

Whether you’re newly diagnosed or wanting to explore new treatments, SRF Carebox Connect provides the resources you need to find trials that could be the right fit for you.

SRF Carebox Connect is a free, easy-to-use platform that helps people living with scleroderma explore clinical trials tailored to their unique diagnosis.

You won't need to sift through complicated medical databases or outdated listings—it's now easier than ever to find clear, up-to-date information using this new tool.

SRF-Funded Studies Advance Scleroderma Discoveries

Our dedicated funding of innovative research continues to drive new discoveries in scleroderma. Two recently published studies are the latest examples of how SRF-funded projects are advancing understanding of the disease, with the goal of better treatments and ultimately, a cure.

Study reveals why scleroderma affects more women than men

This study is focused on uncovering mechanisms that can help explain why more women than men develop systemic sclerosis. In turn, this might lead to targeted therapies.

Systemic sclerosis (SSc) diagnoses clustered around Superfund sites

A Superfund site is a contaminated location in the U.S. designated for cleanup due to hazardous substances that pose a threat to human health. This study found that SSc is more commonly diagnosed around these sites, suggesting a link between environmental contamination and SSc occurrence.

Fundraising for a Cure: How You Can Help Advance Scleroderma Research

"I was inspired to hold a fundraiser because there is still a massive amount of answers to be found about scleroderma."

—Madison K. (dx 2024)

Fundraising is a powerful way to support the SRF’s mission and make a lasting impact. Whether you host a Facebook fundraiser or create a personalized campaign on Classy, your fundraiser fuels the SRF’s mission to advance promising research and improve the lives of people living with scleroderma.

When Madison K. decided to start a Facebook fundraiser for the SRF, her motivation was clear: she wanted to fuel progress in the search for better treatments for scleroderma—and ultimately, a cure.

"It takes extensive amounts of time, money, and resources to make strides in findings," she shares. "My hope for holding the fundraiser was to bring more awareness to this disease and the hopes that there will someday be more long-term answers and success in treatments."

Explore our fundraising resources below and discover how you can make an impact in the search for a cure today.

Traveling with Oxygen: Dee Shares Her Strategies

Traveling with scleroderma can present unique challenges—especially when oxygen is part of the equation.

"I’ve been traveling with oxygen for almost seven years, mostly for medical appointments," Dee B. (dx 2012) shares. "It presents many challenges, and I’ve experienced several significant obstacles. But I refuse to let oxygen keep me from living my life."

A Mother-Daughter Scleroderma Journey

Being diagnosed with scleroderma is uncommon, but for Missa P. (dx 2023), the experience was even more unique—as it was one she shared with her late mother, Karen (dx 2012).

“I watched my mother research ways to manage her scleroderma symptoms, not realizing that one day, I’d be doing the exact same things to manage my own,” she says.

Breaking Her Silence: Beatrice's Story

For years, Beatrice V. (dx 2023) searched for answers, visiting an array of specialists who were unable to piece together her puzzling symptoms. “Over and over, I was told it was this and it was that,” she recalls.

“My extreme fatigue finally made me get serious about my own care,” Beatrice says. More tests followed, including an ANA test, a lung function test, and a biopsy of the rash on her back.

Scleroderma Research in the News

Check out other research updates from the wider community from this month. While we didn't fund the projects below, we're encouraged to see a continued focus on understanding scleroderma.

Focus of NORD study: Rare disease community’s lived experiences

This study is currently seeking participants (persons living with a rare disease and their caregivers) to share their lived experiences. 

Low NK cell levels aid PAH diagnosis in people with SSc: Study

Phase 1 trial of CAR T-cell therapy likely to open soon to SSc patients

In Case You Missed it: Recent SRF Highlights

CONQUEST platform trial of SSc-ILD now enrolling patients in US

You Helped Us Create a First-of-its-Kind Patient Registry, and It’s Already Generating Results

Washington Post: "Scientists Found a Major Clue Why 4 of 5 Autoimmune Patients Are Women"

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.

Ways to Support Research

Employer Matching / Planned Giving

Read the SRF Annual Report