The Scleroderma Research Foundation Monthly eNewsletter

eNews: September Edition

Guess who's performing at Cool Comedy • Hot Cuisine, a tribute to Bob Saget, on November 8th at the Edison Ballroom in New York City?

Top comedians Michael Che, Nikki Glaser, Jeff Ross, and musicians Adam Duritz and David Immerglück of the Counting Crows—and more to be announced!

Join us along with host, Jeff Ross, as we celebrate Bob Saget's tireless dedication to finding a cure and honor Caroline Hirsch with the first-ever Bob Saget Legacy Award in recognition of her many years of dedicated support.

Purchase tickets or make a donation, and help us realize Bob's vision of ending scleroderma.

With deep gratitude to the CCHC Co-chairs:

Susan Feniger • Regina Hall • Kelly Rizzo

And our thanks to the event committee:

Luke Evnin, David Knoller, Rhonda Mace, Violetta Merin, Jayna Schimberg, Deann Wright, Caryn Zucker

Cocktails: 6:30 PM • Dinner 7:30 PM • Dress Code: Cocktail Attire

Questions? Contact Kate Ceredona, SRF Director of Philanthropy, at [email protected]

Supporting Research through Art and Fashion

Calling all art and fashion lovers—Gesso and Raiffe Glass are hosting a giveaway this week only of a custom glass handbag (pictured above) by Raiffe Glass to support the Scleroderma Research Foundation.

"My mom has been living with scleroderma for decades, so I’ve seen the hardship it can cause," says Josh Raiffe, founder of Raiffe Glass. "I know the work Scleroderma Research Foundation does helps improve people’s lives who are diagnosed with Scleroderma." 

Josh's unique and authentic hand-made glass handbags have been worn by celebrities like Doja Cat, Kylie Jenner, and Gigi Hadid. Raiffe has also been featured in collections showcased at New York and Paris Fashion Week.

"I was inspired to launch this fundraising initiative due to the growing interest in my glass bags," Josh says. "By offering these bags in a giveaway, I aim to provide someone who admires my work but may not afford one the chance to own it for free while also helping a cause I’m passionate about."

Josh will donate 100% of the proceeds from this giveaway to SRF. He will also will host a live event on the Gesso app on October 2 at 4:30–5:30 pm ET and will donate all the tips from his one-hour livestream to the SRF. And, Gesso is generously matching all donations during this live stream up to $5,000! We're deeply grateful to Josh and to Gesso for supporting research through this meaningful fundraiser.

Raising Awareness of Interstitial Lung Disease (ILD) Together

On September 13, the SRF participated in the 3rd Annual National Interstitial Lung Disease (ILD) Day, because this complication affects about 15% of people living with scleroderma. We joined forces again with nine other organizations to drive awareness of ILD—one of the most serious complications that can affect those with scleroderma.

Because of ILD's seriousness, we not only want everyone to know what ILD is, but the SRF also funds research by expert investigators and has recently launched CONQUEST—an innovative platform clinical trial designed to rapidly evaluate potential new drugs for people with SSc-ILD.

Learn more about how CONQUEST can help speed the search for treatments for those with SSc-ILD.

How Mercy Navigates Living with Scleroderma

In 2015, Mercy began to notice changes in her health. However, it wasn't until 2017 that she received a definitive diagnosis: scleroderma. She shares her journey, both the highs and lows, to “encourage others that scleroderma isn’t the end.”

Opportunity to Provide Input on Drugs Selected for Medicare Negotiations

The Centers for Medicare & Medicaid Services (CMS) will host a series of patient-focused Listening Sessions this fall as part of the Medicare Drug Price Negotiation Program. The virtual public Listening Sessions will provide an opportunity for patients, beneficiaries, caregivers, consumer and patient organizations, and other interested parties to share input relevant to drugs selected for the first round of negotiations.

Listening Session Dates: The Listening Sessions will be held October 30 – November 15, 2023. Speaker registration will be open September 1 – October 2, 2023. 

Connection and Collaboration at NIAMS Coalition Outreach Day

Earlier this month, Gloria Blecha, the Sr. Director of Community Engagement and Outreach, represented the Scleroderma Research Foundation at the 2023 National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition Outreach Day. NIAMS is one of the 27 Institutes and Centers at the National Institutes of Health (NIH) that focuses on the diseases of the bones, joints, muscles, and skin.

Held at the National Institutes of Health, the meeting brought representatives together from more than 90 organizations. These organizations provide many services to their respective patient communities, including medical treatments, advocacy, education, support groups, and funding research.

"I was honored to represent the SRF at the NIAMS Coalition Outreach Day," says Gloria. "It's invigorating to connect and collaborate with others to share best patient-centered practices and discuss the latest research advances.”

Pictured left to right: Emily Stormoen, CEO, Arthritis National Research Foundation, Jessica Johnson, Dir. Community Research & Education, National Eczema Association, Gloria Blecha, Sr. Director of Community Engagement and Outreach, SRF

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

Ways to Support Research

Employer Matching / Planned Giving