The Scleroderma Research Foundation Monthly eNewsletter

eNews: November Edition

Cool Comedy • Hot Cuisine, a Tribute to Bob Saget, Raises $1.2 Million for Scleroderma Research!

Thanks to everyone at Cool Comedy • Hot Cuisine, and to all those who supported the event from afar, all funds will directly support the most promising scleroderma research so we can one day achieve Bob's dream of ending this disease.

We cannot say thank you enough to all the incredibly generous donors, to our host Jeff Ross, to our partners at the New York Comedy Fest, and to those who lent us their time and talents on stage—Michael Che, Ronny Chieng, Nikki Glaser, plus Adam Duritz and David Immerglück of the Counting Crows!

It was also an honor to present the first-ever Bob Saget Legacy Award to Caroline Hirsch, founder and owner of Carolines and the New York Comedy Festival. Caroline was a dear friend of Bob Saget and had a long and generous history of helping him to raise funds and awareness for scleroderma research. Her support over the past 30 years was one of the reasons so many legendary comedians continued to donate their time and talents to perform at CCHC.

Finally, our deepest gratitude goes to the event co-chairs: Kelly Rizzo, and SRF Board Members Susan Feniger and Regina Hall. Without all of these incredible people, there would be no Cool Comedy • Hot Cuisine.

Research Program Updates Shared at Cool Comedy • Hot Cuisine

Cool Comedy • Hot Cuisine may be our largest fundraising event, but it also provides an unparalleled opportunity to raise awareness about the scientific advancements being made to bring an end to scleroderma. In his keynote remarks, SRF Board Chair Luke Evnin, PhD shared updates about the SRF’s recent research progress. Here are a few highlights noted from his speech:

• We have made tremendous progress in the past year; the SRF has meaningfully expanded the vital CONQUER patient registry which is on track to be the largest and most comprehensive source of longitudinal data on scleroderma patients in the world.  
• We were also able to celebrate the launch of CONQUEST, a highly innovative clinical trial platform conceived and developed by the SRF over many years. Conquest will enable the testing of novel therapies more rapidly and more efficiently than ever before, speeding the introduction of new and more effective therapies to our patients. 
• The SRF-led CONQUEST initiative is a groundbreaking and global effort, supported by an investment of more than $80 million by our initial pharmaceutical partners—Sanofi and Boehringer Ingelheim. 
• Launching Conquest has been a major goal of the SRF for many years. The platform will begin enrolling patients in more than 30 countries in 2024 and we expect the first set of results, with more to follow, in 2026.  
• And, one of the huge opportunities embedded within the launch of CONQUEST is that it has enabled the SRF to unite the global scleroderma clinical community.

These are just a few of the important ways we have driven research progress forward the past year. Generous donor support is the driving force behind our relentless pursuit of a cure, ensuring we remain the leading, most impactful nonprofit investor in scleroderma research in the United States.

Big thanks to CCHC Volunteers

We cannot say thank you enough to the people who worked behind the scenes to make Cool Comedy • Hot Cuisine possible: our wonderful volunteers! Thank you SO MUCH for donating your time and energy to help make this event such a great success.

Save the date: November 28th is

#GivingTuesday is a global movement – a day of giving back to celebrate generosity & support the causes closest to your heart. Please join us this #Giving Tuesday to make an impact for people living with scleroderma by making a gift or helping to spread awareness about this disease. Don’t want to wait? No problem! You can make a gift today to advance research progress right now!

Ally's Allies Triumphs in Inaugural Golfing for a Cure Event

The Scleroderma Research Foundation’s Cure Crew Members are passionate about spreading awareness and determined to help raise funds to find a cure. This completely describes Linda—she produced a fundraising golf tournament and dinner for more than 130 people in August! 

Her motivation was her daughter Ally, who was diagnosed with scleroderma in January 2022 after living with Raynaud’s symptoms since 2015. After learning that there was no cure for scleroderma, Linda says, “it was at that moment I decided I’m going to help with that someday and do what I can to raise funds to find a cure."

Linda decided to call her fundraising efforts "Ally’s Allies" and even established this as a 501(c)(3) organization. On August 30th, Golfing for a Cure saw over 70 golfers hit the links; they were joined by another 60 for a dinner and raffle. Ally spoke about what it was like to live with scleroderma and encouraged the guests to learn more about the disease. 

This inaugural event raised over $23,000 for scleroderma research. Linda shares that “our goal was to raise awareness of this debilitating disease and funds for a cure. I believe we accomplished both of those goals!” We couldn’t agree more and congratulate Ally’s Allies for making such a huge difference for the scleroderma community.

A Weekend of Collaboration at the American Rheumatology Conference

What a great weekend at the American Rheumatology Conference 2023! Members of the SRF Board and staff connected with leading researchers, clinicians, and industry partners from across the globe at this annual international conference for rheumatology professionals. 

In addition to the great exchange of information at the conference itself, the SRF hosted convenings for two of our key research initiatives—CONQUEST and CONQUER. More than 50 representatives from participating clinical trial sites around the world gathered for a presentation by CONQUEST leadership about the progress of our groundbreaking platform clinical trial. Participants shared insightful feedback as we gain momentum toward patient enrollment in 2024. 

The SRF also hosted two meetings to support the CONQUER registry our nationwide, longitudinal scleroderma patient registry launched in 2018. Research Coordinators from 17 participating sites and leaders from the University of Utah Data Coordinating Center gathered for a daylong meeting to share best practices and discuss ways to recruit and retain participants. CONQUER Steering Committee members—including Principal Investigators from each participating site—also convened to report on registry progress, and research papers in the pipeline, and define objectives for the coming year. 

It's always so inspiring to collaborate with such esteemed colleagues and to see the advancements made possible when we unite our research community in our efforts to find a cure.

Pictured: CONQUER Research Coordinators & Data Control Center team

35 Years of Letter Writing: How One Man Raises Funds for Cure in Memory of His Mother

For 35 years now, David H. has raised funds for a cure in memory of his mother Kathryn, who passed away in 1984 from scleroderma complications. Here's what he has to say about why fundraising for research matters to him:

"During the time my Mother had scleroderma very little was known about the disease, with hardly any research going on. In 1987, the Scleroderma Research Foundation was founded to provide funding for basic and clinical research. I am supporting their fund raising efforts again this year, which is the reason for this annual letter."

Thank you, David, for your many years of dedication to advancing scleroderma research.

ONLINE AUCTION: Bid Now on this Unique Bob Saget Portrait

Looking for a unique holiday gift that will also make a meaningful impact for people living with scleroderma? 

Then don’t miss this chance to bid on a one-of-a-kind digital portrait of Bob Saget, and celebrate his lifetime of dedication to the scleroderma community! 

The lucky winner of this limited-time-only silent auction item will win a original custom digital portrait of this beloved, iconic comedian/actor/producer/author, and includes elements that highlight Bob’s life and causes close to his heart—including the Scleroderma Research Foundation (look closely and you’ll find an image of SRF Founder Sharon Monsky in the portrait).

November is Pulmonary Arterial Hypertension (PAH)Awareness Month

November is PAH Awareness Month. PAH occurs in 8%-17% of people with scleroderma and can have serious consequences—especially as it is not always diagnosed quickly. People with scleroderma are at high risk for PAH.

Part of the problem is that there are few very early symptoms of PAH. Symptoms that develop are often typical of other conditions (such as asthma) or they are mistaken for a general lack of fitness. This can cause a further delay in diagnosis.

This is why regular screening is very important. Your doctor should be monitoring you regularly to check on the health of your heart and lungs. If you do develop PAH, your doctor can recommend a treatment that suits you.

Learn more about early warning signs and how to address PAH with your doctor on our website.

Thank you to our Sponsor for PAH awareness, Janssen Pharmaceutical Companies of Johnson & Johnson 

We're Grateful for You.

As we think of all the things we're thankful for this week, you'll be at the top of the list. Thank you for being part of this incredible community and for joining us in the search for a cure.

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

Ways to Support Research

Employer Matching / Planned Giving