November 2022 eNews

eNews: November Edition

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.

Thanks to our many friends & supporters, we've made real progress for those living with scleroderma. But there's more work to do to find a cure—and research is the key.

This is why a generous donor is helping us kick off the holiday season with an incredible gift: they will MATCH THE FIRST $50,000 WE RAISE! So every dollar you give will become two dollars–doubling your impact.

When you donate to the SRF, your gift will provide hope to all affected by this disease, because you're helping fund the most promising research into scleroderma. Together, we can and WILL end this disease!

Learn More and Donate

Celebrating Pulmonary Hypertension Awareness Month in November

Here are two examples from our PAH awareness campaign in the past month – a spotlight on a person living with this disease, and a webinar from a researcher who studies scleroderma and PAH.

Rae's Story: Managing Scleroderma and Pulmonary Arterial Hypertension

Last year, Rae shared her journey to a scleroderma diagnosis with us. This year for PH Awareness Month, we’ve followed up with her to learn more about how she's been living with this disease and also being diagnosed with Pulmonary Arterial Hypertension (PAH), a form of PH.

Webinar on Advances in Pulmonary Arterial Hypertension Research Now Online

Earlier this month, Dr. Roham Zamanian, MD (Associate Professor of Medicine in the Pulmonary and Critical Care Medicine Division at Stanford University) provided educational resources about the symptoms of PAH, how it’s diagnosed, advances in available therapies, and the challenges of conducting SSc-PAH research.

Thank you to our Partner Sponsor for PAH awareness, Janssen Pharmaceuticals.

SRF Research

CONQUER Research Collaboration

(Pictured: CONQUER Research Coordinators and SRF staff in Philadelphia)

Last week during the American College of Rheumatology Conference in Philadelphia, the SRF hosted two meetings to convene Principal Investigators and Research Coordinators from all 17 institutions participating in the CONQUER Registry. Each center provided updates their progress enrolling patients and collecting data for this nationwide longitudinal patient registry, and the group worked to define the registry's strategy for 2023.

By enrolling thousands of patients from around the country in the CONQUER Registry, researchers and clinicians will be able to learn about all forms of scleroderma, in patients of all backgrounds and ethnicities. They can then use that knowledge to advance research and discovery.

But CONQUER still needs more participants. Want to learn more about CONQUER and how you can a part of groundbreaking research? Check out our website.

Learn More

Making a Difference

Let's Hear It for Our Cure Crew!

The Scleroderma Research Foundation’s Cure Crew is a grassroots volunteer program that raises awareness about scleroderma and the funds to support SRF’s research. We're regularly inspired by new ways they approach scleroderma advocacy–here are two creative ways members have stepped forward.

Running a Marathon to Raise Awareness

To honor a friend who passed away earlier this year due to scleroderma complications, Sam recently ran the Chicago Marathon to raise funds and awareness in memory of Grégoire.

"Grégoire and I would often discuss marathons, and running; he had run the Chicago Marathon previously," Sam says. "I had always planned on running the Chicago Marathon when Grégoire died in June, so I thought running it in his honor would be a worthy tribute." To help raise awareness, Sam wore a shirt stating that he was running for scleroderma research with the SRF website address (pictured).

Fundraising through Sharpening Knives

Jess came up with a unique way to raise funds for a cure while also highlighting her business. She contributed 10% of sales from her knife sharpening service, (Knife Flight) to support SRF's research.

Jess says, "Scleroderma affects my hands in various ways and having a sharp knife is truly safer... I’m proud of our business and proud to have the opportunity to raise money for the Scleroderma Research Foundation."

Interested in joining the Cure Crew? We'll help you get started!

Email Us

www.srfcure.org

Ways to Give

Donate Today / Employer Matching / AmazonSmile / Planned Giving