The Scleroderma Research Foundation Monthly eNewsletter

eNews: May Edition

New Patient Forum Session on CAR T Therapy

& Check Out the NEW Meet + Chat Feature!

Register today and join us on June 3 for our Annual Patient Forum "Collaborating for a Cure" — a FREE, virtual event for people living with scleroderma and those who care for them.

At this event, you can learn from our panel of experts about symptom management, research news, and your role in finding a cure for scleroderma. Make sure to attend our recently announced session on CAR T therapy, which will cover current and future applications of CAR T in scleroderma treatment, B cell depletion therapy alongside CAR T therapy, and more.

This year, we're also excited to introduce the new Meet + Chat feature. In this section of the event site, you'll find the Community Board, a virtual public discussion platform—exclusive to attendees of the SRF 2024 Patient Forum—where you can engage in real-time discussions and exchange valuable insights with other members of the scleroderma community. You'll also find a "Personal Connect" feature where you can privately message other attendees.

Stay tuned—more information on this year's presenters and session topics is coming soon!

Raise Your Voice and #SayScleroderma

It's that time of year again! June marks Scleroderma Awareness Month— are you ready to spread the word?

Why #SayScleroderma? Many people are unaware of what scleroderma is and the impact it has on those affected. This lack of awareness can lead to delays in treatment and diagnosis, and hinder progress in finding a cure.

Want to get involved? Here are some ways to #SayScleroderma:

📹 Share Your Story: Post a video on social media saying "scleroderma" and why awareness is important to you. Check out our social media toolkit for more ideas!

💬 Start Conversations: Talk to your friends, family, and colleagues about scleroderma. Every conversation counts.

👤 Add a Profile Picture Frame: Show your support proudly by updating your profile picture with our special #SayScleroderma frame.

📣 Spread the Word: Share our #SayScleroderma social media posts and tag us (@srfcure) to help us reach even more people.

Let's keep the momentum going beyond June. Together, we can make sure scleroderma is heard until we find a cure.

The SRF Co-Sponsors Recent NIH Workshop

Collaboration is critical to making research progress. That’s why the SRF co-sponsored a recent workshop with the National Institutes of Health (NIH) & other nonprofit organizations to discuss scientific advances in immunotherapies and cellular therapies in systemic sclerosis (SSc) and chronic graft-versus-host disease (cGVHD).

The meeting brought together more than 100 scientific leaders and investigators for a day-and-a-half of topical, thought-provoking presentations. We were honored to have SRF Board Chairman Luke Evnin, PhD serve on a panel to share insights on new funding and infrastructure approaches to accelerate research.

Pictured: Panelists presenting at NIH Workshop.

Celebrating Bob Saget and His Legacy

On May 17th, we celebrated and remembered a very dear friend on his birthday—Bob Saget. He will live on in our memories not only for all the ways he inspired us and made us laugh, but also for his dedication to ending #scleroderma.

As a proud Board Member of the Scleroderma Research Foundation for many years, Bob was committed to shining a spotlight on this complex disease and to raising funds for research. He understood that through research, there will come a day when no one will have to suffer from scleroderma. 

Bob’s impact on our organization and the scleroderma community at large will never be forgotten. We will continue to hold Bob in our hearts while we remain as committed as ever to our mission—and his dream—of finding a cure.

Mother's Day 2024 – Remembering Missy Cavazos

“She was an anomaly for the scleroderma world,” says Olivia Muñoz Mulkin of her mother, Maria “Missy” Cavazos. This Mother's Day, we remembered Missy, a remarkable woman who defied the odds in a battle against scleroderma.

In 2000, Olivia and her sister Mariana were only 10 and 17 years old, respectively, when their mother was diagnosed with scleroderma.

“I saw the day-to-day changes and the pain she went through,” Olivia describes. “Even though our mother was in pain daily, she was literally the strongest woman I have ever known. She did not let scleroderma win; she fought it and continued to live her life.”

Pictured: Missy Cavazos.

Say Hello to our Newest Staff Member: Welcome Jill!

Our intentionally small staff has grown by one! Please join us in welcoming the SRF's new Communications Specialist, Jill Litman. She's a recent Public Health graduate who brings a diverse array of experiences working in nonprofit marketing and communications.

She is excited to be part of advancing the SRF’s mission. Jill looks forward to lending her communications skills to raising awareness about scleroderma and the need for research.

Mark Your Calendar: Upcoming Webinar from PFF

Wednesday, May 29 from 12-1 PM CST

Join the Pulmonary Fibrosis Foundation for the next installment of their webinar series! This free webinar, "Pulmonary Fibrosis and Pulmonary Rehabilitation: Exercise, Education, and Empowerment" will feature guest presenter Aubree Carlson, PhD, RN.

Learn about the importance of pulmonary rehabilitation, what this practice involves, and how you can incorporate these skills into your regular daily schedule.

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 this focus on understanding scleroderma.

‘Be aggressive’ in detecting, managing interstitial lung disease in early scleroderma

Anemia is common in systemic sclerosis, tied to severity

New model predicts risk of progressive lung disease in SSc-ILD

‘Subclinical’ left ventricular abnormalities portend lower survival, breathlessness in SSc

In Case You Missed it: Recent SRF Highlights

The Scleroderma Research Foundation Announces the Launch of the CONQUEST Trial Platform and IND Clearance

Introducing Dr. Greg Gordon, the SRF's First Chief Medical Officer

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.

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Ways to Support Research

Employer Matching / Planned Giving

Read the SRF Annual Report