This Month, Put Pulmonary Hypertension in the Spotlight

November is PH Awareness Month. Join us in spreading the word, championing early diagnosis, and supporting everyone navigating PH and scleroderma.

Pulmonary arterial hypertension (PAH) is one type of pulmonary hypertension (PH), which is a general term for high blood pressure in the arteries of the lungs. PAH is the type of PH most closely linked to scleroderma because it’s the only type caused directly by the disease itself. 

For people living with scleroderma, PAH is one of the most common and severe complications, making increased awareness and early screening especially important for the community.

Get Involved This PH Awareness Month 

• Learn more on the SRF website. Find information on how scleroderma can lead to PAH, symptoms to watch for, and why screening is so important. 

• Join the PH Association’s shared decision-making webinar. On Tuesday, November 17, at 2 p.m. ET, learn how patients and doctors can work together to build a PH treatment plan that reflects what matters most to you.

• Watch our PH playlist on YouTube. Check out our past webinars where experts explain how PH develops in people living with scleroderma, how it is diagnosed, and treatments that can help manage symptoms and improve quality of life.

Cool Comedy • Hot Cuisine Raises More Than $1M to Help End Scleroderma! 

On October 13, the Beverly Wilshire buzzed with energy and excitement as hundreds of people joined together with a shared purpose of ending scleroderma. With some of the biggest names in comedy and entertainment in one room, the star-studded night delivered big laughs and an even bigger mission: raising critical funds for research and carrying scleroderma into the national spotlight.

The Scleroderma Research Foundation is deeply grateful to all of the event’s generous friends and supporters, host Jeff Ross, and the incredible performers who donated their time and talent: Fortune Feimster, Matt Friend, Ron Funches, Jay Pharoah, and Lisa Ann Walter, alongside guest co-auctioneer Seth Green and guest presenter Howie Mandel.

The evening’s most moving moment came when TV legend John Stamos took the stage to accept this year’s Bob Saget Legacy Award, remembering his dear friend whose love for this cause still lights the way.

Long after the final punchline, the evening’s impact carries on, as more people join us to #SayScleroderma and help advance the search for a cure.

Advancing Scleroderma Research at ACR

This month, the SRF leaders will join clinicians and scientists from around the world at the American College of Rheumatology’s (ACR) Convergence conference in Orlando, FL, one of the leading international gatherings focused on rheumatic diseases.

Beyond the conference sessions, the SRF will convene two meetings bringing together more than 50 members of the CONQUER Registry community, including principal investigators (PIs) and Research Coordinators (RCs) from 20 participating medical centers across the country.

These meetings help align research priorities, strengthen collaboration, and ensure consistent, high-quality data collection across CONQUER’s participating sites. That work is already making a difference: CONQUER data are being used by leading pharmaceutical companies to inform the development of new treatments for scleroderma.



By bringing this community together and making valuable patient data available to researchers and industry partners, the SRF is helping accelerate scientific discovery and the development of better treatments for scleroderma, while bringing greater visibility about this disease to a global stage.

Pictured: Research Coordinators at CONQUER meeting at ACR Convergence 2025 in Chicago, IL.

For Hope Turns 30: A Legacy of Scleroderma Awareness 

This month, as the landmark film For Hope turns 30 on November 17, the SRF is remembering this inspiring film and the man who brought it to life, late SRF Board Member Bob Saget. Bob directed and executive produced it as a tribute to his sister, Gay, who lost her life to scleroderma at just 47.

When the film aired on ABC in 1996, it gave many viewers their first look at scleroderma and the families who live with it. For Hope starred board member emeritus Dana Delany and featured SRF founder Sharon Monsky. 

"Bob was so unbelievably proud of For Hope. When we first started dating, one of the first things he did was mail me a copy," says Kelly Rizzo. "He wanted me to see it because he knew it would help me understand him and his life’s work. I was deeply moved by his need to tell his sister’s story and his determination to raise awareness of this devastating disease, in his unrelenting hope that a cure would follow."

Since its premiere, For Hope has helped put scleroderma on the map, bringing national attention to the disease and sparking conversations about the need for research. Three decades later, it continues to raise awareness and inspire hope for a cure. 

Join us in celebrating the 30th anniversary by watching the full movie for free on the SRF YouTube channel. 

Celebrate the Season and Support Scleroderma Research

Community Spotlights – Living with Scleroderma and PH

This PH Awareness Month, members of the SRF Cure Crew are sharing what it’s like to live with scleroderma and pulmonary hypertension. 

The SRF Cure Crew is a grassroots network of volunteers living with scleroderma and their loved ones. Together, they raise awareness and funds for research in many ways, including by sharing their stories. Read on to hear from two Cure Crew members about their experiences with PH.

Have you faced PH alongside your scleroderma diagnosis?

Telling your story can help someone else spot the signs sooner and know that they are not alone. Reach out if you’d like to share your experience on our blog or on social media.

Current Research Opportunity

While the SRF is not affiliated with this study, it may be of interest to people living with scleroderma and caregivers who want to take part in research.

You'll find eligibility details and participation requirements at the link below.

Study Name: A Diet Study for Scleroderma GI Symptoms

Sponsoring Institution: University of Michigan Scleroderma Program 

PI: Dinesh Khanna, MD, MSc 

For Info Contact: ssc-coordinator@umich.edu

Scleroderma Research in the News

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

Study ties acid reflux, bloating to fatigue in scleroderma

Pain, psychological factors and physical function closely linked in people with systemic sclerosis

Dinesh Khanna, MD, MSc, SRF-funded investigator and Co-Chair of the CONQUEST Steering Committee, is a co-author of this study.

Ultrasound technique may help detect muscle changes earlier in SSc

New anti-scarring pill shows encouraging safety in early trial