The Scleroderma Research Foundation Monthly eNewsletter

eNews: June Edition

Advancing research starts with YOU—join the 2023 Research Challenge!

Our annual campaign highlights one SRF-funded research project that is transforming the landscape of scleroderma research. This year, we are excited to highlight the CONQUER Registry (COllaborative, National Quality and Efficacy Registry).

Launched by the SRF in 2018 as the first nation-wide, longitudinal scleroderma registry to track data on patients’ disease over many years, CONQUER has already improved researchers’ understanding of scleroderma, its progression, and the effectiveness of current therapies.

The value of the CONQUER Registry is clear. More than 750 patients have enrolled through 17 partnering scleroderma centers across the U.S. and the data collected is already being used to drive innovative scleroderma research. Principal investigators are also further leveraging CONQUER data to help secure additional project funding, bringing more dollars to scleroderma research overall.

Will you help us drive groundbreaking projects like the CONQUER Registry? You can make a difference by making a gift, which will be matched dollar-for-dollar, up to $50k, through July 31 thanks to a generous gift from SRF board members, Dr. Luke Evnin and Deann Wright. Or, share the challenge with your network and invite them to help us move research forward.

Scleroderma Awareness Month 2023

As part of Scleroderma Awareness Month, we invite you to #SayScleroderma with us. Not enough people know what scleroderma is or does. Lack of awareness causes delays in treatments and diagnosis. But together we can change this. 

Here's just a few of many ways you all stepped forward this month.

Idaho Recognizes June as Scleroderma Awareness Month

Our collaborators at Scleroderma Outreach Northwest successfully asked Idaho Governor, Brad Little, to proclaim June as "Idaho Scleroderma Awareness Month." In this proclamation, they asked Gov. Little to point to the SRF as a leader in the search for the cure.

Our thanks goes to Scleroderma Outreach Northwest for advancing this proclamation!

Pictured: Dee B., of Scleroderma Outreach Northwest

Run Greg Run is Now Streaming on Amazon Video

Project Scleroderma's awareness-driven documentary, “Run Greg Run,” is now available on Amazon Video!

We couldn’t be more thrilled for Project Scleroderma, a longtime partner organization of the SRF that raises scleroderma awareness globally, and for Greg Cohen, whose story of living with scleroderma and his inspiring athleticism is told in this film.

For Scleroderma Awareness Month, we held our second annual Patient Forum, "Collaborating for a Cure." All sessions from the day (including the info-packed Q&A sessions), are now available to watch on our YouTube channel.

Learn about topics like Clinical Trials, how to advocate for yourself at the doctor's office, understanding the vascular biology of scleroderma, and more.

Golfing for a Cure: How Brian Elfus Honors His Mother by Raising Funds

Longtime sports agent and founder/CEO of Elfus Sport Management Brian Elfus is no stranger to rare diseases that currently do not have a cure. His mother recently passed from scleroderma complications after living with the disease for many years, and wife was diagnosed with Fibromuscular Dysplasia in 2019. This is why he's fundraising to support research for BOTH diseases by hosting the 2nd Annual ESM Charity Golf Tournament on August 21 at the Park Hyatt Aviara Resort, Golf Club and Spa – Carlsbad, CA.



He shared this message with us:

My mother, Roberta, suffered from scleroderma for over 25 years.  Unfortunately, Roberta passed away September 25, 2022, shortly after the inaugural tournament. As you can imagine, I am even more determined now to help find a cure for scleroderma. May her memory be a blessing.

I can’t help but think how fortunate we are to have access to the top care and resources available. But, many patients aren’t as lucky. The ESM Foundation Charity Golf Tournament will financially support the Scleroderma Research Foundation and Fibromuscular Dysplasia Society of America. Together we can help people like my late mom receive the care they need.

Please join us for an afternoon of great golf and great friends. We look forward to seeing you there.

Pictured, left to right: Roberta with Brian Elfus

Global Patient Partnership Summit

Last month, Gloria Blecha, the SRF’s Sr. Dir. Community Outreach & Education, attended Boehringer Ingelheim’s Global Patient Partnership Summit (GPPS) in Miami, along with 150 other patient organizations.

The event aimed to foster collaboration between these organizations and the pharmaceutical industry to create innovative centricity solutions that bring real changes to patient care. They addressed crucial patient issues at all levels.

Simultaneous summits in Vienna and Singapore ensured global patient input for a comprehensive vision. The event united patient consultants, BI's patient engagement personnel, and stakeholders, placing patients at the core of healthcare decisions.

We're grateful for the opportunity to collaborate with so many great patient organizations and give input to our partners at BI, so that we can help advance better care for those living with scleroderma.

Pictured, left to right: Gloria Blecha (SRF), Maureen Suave (Scleroderma Canada), and Anna Salas (Scleroderma Argentina)

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

Ways to Support Research

Employer Matching / Planned Giving