The Scleroderma Research Foundation Monthly eNewsletter

eNews: January Edition

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

Join us in giving a warm welcome to Greg Gordon, MD, JD—the SRF's first Chief Medical Officer! As CMO, Dr. Gordon will provide both strategic management and operations oversight for our recently announced global clinical trial program, CONQUEST.

In addition to his work to advance the development of new and innovative therapeutics for the scleroderma community, we also look forward to having Dr. Gordon lend his expertise to expand our patient education and disease awareness resources.

Remembering Bob Saget and Continuing His Legacy

This month, we remember our beloved friend and SRF Board Member, Bob Saget, who passed suddenly on January 9, 2022. Bob worked tirelessly as a champion for those with scleroderma and it's unbelievable it's been two whole years since we lost him.



When Bob passed, we—along with the entire world—were overcome with grief. We channeled our loss into action so that we could keep Bob’s commitment to finding a cure alive by forming the Bob Saget Memorial Scleroderma Research Fund. SRF Board Chair Luke Evnin, PhD, and Board Member Deann Wright generously pledged to match the first $1.5 million raised to honor Bob's legacy.

To date, our deeply generous community has exceeded the match by raising more than $2.1 million in Bob's memory, and this fund is already being used to directly support the SRF's research grant program. We will continue to raise funds in Bob's honor until we achieve his vision—and ours—of a world free of scleroderma.

New Publication on Female Bias in Autoimmunity from Dr. Erika Darrah

Autoimmune rheumatic diseases like scleroderma, lupus, and Sjögren’s syndrome have a female bias that remains a mystery. For example, there are five female scleroderma patients for every one male scleroderma patient. The female biases for lupus (9:1) and Sjogren's (19:1) are even higher than scleroderma. Uncovering the mechanism of this bias could lead to disease modification strategies.

Dr. Erika Darrah and a team from Johns Hopkins recently published their work on female bias in autoimmunity (funded in part by the SRF) in the Journal of Clinical Investigation. They found that XIST, the long noncoding RNA that silences the second X chromosome in all female cells, can also act as a driver of inflammatory signaling when it is released from damaged cells. XIST is unique to female cells and is also present at much higher levels in female lupus patients compared to healthy females. Male cells generally lack XIST, so this process does not occur in males.

The authors found that when the released XIST RNA is picked up by certain other immune cells, it enhances those cells’ capacity to stimulate inflammatory immune responses through a receptor called TLR-7. Because this immune activation occurs only in females, it may contribute to the female immunologic advantage in response to both viral infections and vaccines, while also lowering the threshold for the development of autoimmune diseases, including lupus and perhaps scleroderma.

More Scleroderma Research in the News

Join us in congratulating SRF-funded investigator Dr. Howard Chang, of Stanford University, on becoming this year's Laureate in the King Faisal Prize for Science. He was selected for "his pioneering work in uncovering the significance of long non-coding RNAs in gene regulation and function and his collaborative efforts in advancing genome-wide methodologies to identify DNA regulatory regions."

A Big Shoutout to All SRF Cure Crew Members!

Give a big round of applause to the SRF Cure Crew—in 2023 alone, they raised more than $158,000 for research! The Cure Crew is a grassroots group of volunteers that help raise awareness of scleroderma and funds for research. Thank you SO MUCH to everyone who helped make a difference.

In just one example of the many creative ways the Cure Crew showed up last year, Molly (pictured left) raised funds via a sold-out, 2-night caberet in honor of her friend Jess (pictured right), who lives with scleroderma. Here's why the evening was important to her:

"My best friend, Jess, has been battling scleroderma for years. She is truly a warrior. She is hilarious, fun, an amazing mother, and an amazing friend. I cannot imagine my life without her...It is obvious that there is so much more work to be done to figure out this mysterious disease and offer better management and ultimately a cure." —Molly

Cure Crew members like Molly make a direct impact in the search for a cure, and we are sincerely grateful for everyone's help. Anyone can get involved—learn more on our website.

Coming Up: February is Rare Disease Awareness Month

Rare Disease Awareness Month is a time for us to come together and share what it means to live with a rare disease, like scleroderma. Here are just two of many upcoming opportunities in February to participate and connect with other community members:

Looking for more ways to be a part of spreading awareness and important discussions? Join us on social media to share stories and information, or connect with someone in your life and have a conversation. By spreading the word about rare disease like scleroderma and the urgent need for research, you can make a difference.

Opportunity to Participate in Study about Working and Living with Scleroderma

Opportunity to Participate in Study about Working and Living with Scleroderma: This opportunity is for adults (18 years old or older) who are working and have systemic sclerosis. A research team is studying a virtual intervention to support people with scleroderma who are in the workforce online. For more information, contact Dr. Janet Poole of the Occupational Therapy Graduate Program at the University of New Mexico.

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

Ways to Support Research

Employer Matching / Planned Giving