The Scleroderma Research Foundation Monthly eNewsletter | |
Are You All In for the 2024 SRF Research Challenge? | |
Thank you for standing with the SRF in our laser-focused pursuit of a cure. This month we kick off our Annual Research Challenge to help us fuel medical discoveries in the year ahead—with double the impact.
This year's Challenge highlights the work of Dr. Ryan Flynn, who is tackling a long-standing conundrum in scleroderma research: how are rheumatic disease autoantigens, which normally reside inside the cell, “seen” by the immune system and become the target of an immune response? Learn more about Dr. Flynn's research study here.
Your support of innovative research like Dr. Flynn's, and all other projects funded by the SRF, help to advance our understanding of this disease, enabling improved treatments, and ultimately, a cure. You can show you are all in on scleroderma research by making a gift today.
When you donate, your gift will be matched DOLLAR FOR DOLLAR* thanks to the generosity of the Schimberg Family Foundation, and SRF Board Members Luke Evnin and Deann Wright. So please, join this year's Research Challenge and be part of the next era of breakthroughs that could end scleroderma.
| *Up to $75,000 through July 31, 2024. If you've already made your Research Challenge gift, thank you! |
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1,000 Participants Enrolled in CONQUER! | |
We are proud to announce that this month the CONQUER registry enrolled its 1,000th patient participant!
In 2018, the SRF launched the CONQUER (COllaborative National QUality and Efficacy Registry)—a first-of-its-kind nationwide longitudinal scleroderma patient registry and biosample repository aimed at improving care and developing more effective, personalized therapies for scleroderma patients.
CONQUER is just one of the many ways the SRF is "all in" for research: this large-scale project is a key component of our multifaceted research program that is already generating results—to date, 6 papers have been published based on analysis of data from the registry.
Interested in participating in CONQUER? Learn more about the project and how you can get involved.
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Dr. Greg Gordon Attends EULAR in Vienna | |
This month, the SRF was proud to be represented at the annual European Alliance of Associations for Rheumatology (EULAR) Congress by our Chief Medical Officer, Dr. Greg Gordon.
Held on June 12-15 in Vienna, Austria, the EULAR Congress serves as a dynamic platform for scientific, educational, and social exchange among professionals in rheumatology.
"Participating in the EULAR Congress is crucial for staying at the forefront of rheumatology research. I was proud to represent the Scleroderma Research Foundation and engage with my peers who are dedicated to improving patient care," said Dr. Gordon.
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Patient Forum Recordings Now on YouTube! ▶️ | |
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On June 3, we held the 3rd annual SRF Patient Forum, "Collaborating for a Cure", featuring informative sessions and live Q&As from scleroderma experts.
Did you miss the live event? No problem—you can catch up on all the sessions on SRF's YouTube channel. Learn about CAR T-cell therapy, platform trials, non-pharmacological management of scleroderma symptoms, and more.
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June is Ending, But There's Still Time To #SayScleroderma | |
Throughout Scleroderma Awareness Month, the SRF has invited you to join us to #SayScleroderma. Too few people understand what scleroderma is and its impact on the people who live with this disease. This lack of awareness leads to delays in diagnosis and treatment—but together, we can make a change.
Here are some inspiring ways the scleroderma community has shared their stories and spread awareness:
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In this video, created in collaboration with Project Scleroderma, Andrew talks about his journey with scleroderma and a secondary condition called pulmonary arterial hypertension (PAH).
"I will speak about PAH and #SayScleroderma until everybody knows their names," he says.
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While working as a PhD student in Cambodia in 2020, Jennifer Zelnick was diagnosed with limited cutaneous systemic sclerosis.
“I #SayScleroderma because, although it is a rare disease, it affects many people and it should not take years for patients to receive a diagnosis,” she says.
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Early in 2022, Hong Thu Nguyen was diagnosed with systemic scleroderma, and these days, she is a passionate advocate for research.
“Many people feel like I am different from before, but I can't explain to them, since they had no clue about what I was suffering from,” she says. “I #SayScleroderma to raise awareness so that more people learn about this disease.”
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After her systemic scleroderma diagnosis in 2016, Dee Burlile became an activist for raising awareness.
This year, her efforts resulted in signed Proclamations of scleroderma awareness from Governors Brad Little (ID) and Jay Inslee (WA).
"Proclamations supporting scleroderma awareness give patients a voice, and make them feel empowered," she says.
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Let's keep the Momentum Going!
Though June is coming to a close, you can #SayScleroderma all year long.
Are you inspired to spread the word about scleroderma? Begin by starting conversations with your online community and using our social media toolkit with graphics that you can share!
You can also use the custom #SayScleroderma profile frame (pictured left featuring Elaine and David Wiley) to show your support for raising awareness about this disease.
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Say Hello to our Newest Staff Member: Welcome Neha! | |
Please join us in welcoming the SRF's new Senior Accounting Manager, Neha Pamboo! She is a seasoned finance and accounting professional with experience managing financial operations, reporting, and analysis in nonprofit and corporate sectors.
As part of our intentionally small team (8 full time staff in all), Neha looks forward to leveraging her financial expertise to help the SRF continue to advance research toward a cure for scleroderma.
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Scleroderma Research in the News | |
Check out the latest research updates from the wider community from this month. While we didn't fund these projects, we're encouraged to see this focus on understanding scleroderma. | |
In Case You Missed it: Recent SRF Highlights | |
Research is at the center of all we do to find a cure. | |
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