The Scleroderma Research Foundation Monthly eNewsletter | |
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Save the Date:
Cool Comedy • Hot Cuisine is October 29, 2024!
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Mark your calendars for this year's Cool Comedy • Hot Cuisine (CCHC), benefiting the Scleroderma Research Foundation. Join us on Tuesday, October 29 in Los Angeles for an unforgettable evening of laughter and fine dining to raise funds for scleroderma research.
Hosted by the hilarious Jeff Ross, this event will feature some of the world’s greatest comedians, musicians, and performing artists. (Talent line-up to be announced this fall.) We're extremely grateful to CCHC co-chairs, Susan Feniger, Regina Hall, Caroline Hirsch, and Kelly Rizzo, for their dedication and commitment to Bob Saget’s legacy by helping us continue to make this event truly special.
We are excited to announce that sponsorships are now available to purchase. Don't miss out on this opportunity to partner with us and make a meaningful impact in the search for a cure for scleroderma.
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Questions about becoming a sponsor? Please contact Kate Ceredona, Director of Philanthropy, at kate@sclerodermaresearch.org.
Stay tuned! Individual ticket sales are coming soon!
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CONQUEST is Now Enrolling Patients at Centers Across the United States | |
CONQUEST, a highly innovative platform clinical trial conceived of and led by the Scleroderma Research Foundation (SRF) and designed to rapidly advance promising treatments for scleroderma, is now enrolling patients at centers across the US.
The SRF developed CONQUEST with input from expert scleroderma clinicians and insights from potential partners, including inaugural participants, Sanofi and Boehringer Ingelheim. The first patient entered the study in April 2024, and now the groundbreaking effort is rapidly expanding, with CONQUEST trial sites opening across the US and plans for more in over 30 countries.
“With a long history of supporting innovative research, the Scleroderma Research Foundation is uniting the global community. With the vital participation of people living with this disease, we can accelerate efforts to advance novel therapies for treating scleroderma,” said Dr. Gregory Gordon, Chief Medical Officer of the SRF.
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Make a Difference for the Scleroderma Community: Volunteer with Cure Crew | |
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The Scleroderma Research Foundation’s Cure Crew is a grassroots volunteer program that raises awareness about scleroderma and funds to support the SRF’s research.
Cure Crew members around the world are united by a shared belief in the power of research to help people with scleroderma live longer, fuller lives, and lead us closer to a cure.
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Nafisa's Fundraiser for Scleroderma Awareness | |
"I never imagined I would be grateful for my diagnosis, but it has helped me understand myself better and given new meaning to my life,” says Nafisa Z. (dx 2020).
In June, for Scleroderma Awareness Month, Nafisa held a fundraiser, pledging 15% of all sales to the Scleroderma Research Foundation.
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Are you passionate about making a difference in the search for a cure? Get involved by hosting your own fundraiser!
Whether it’s a bake sale, a charity run, a virtual event, or a neighborhood gathering, your creativity and enthusiasm can contribute to advancing research and improving the lives of people living with this challenging disease. By organizing a fundraiser, you become an essential part of our mission, empowering your community to help bring us closer to a world without scleroderma.
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Scleroderma Outreach Northwest and the Seattle Mariners Cohost “Strike Out Scleroderma” Day | |
On July 21, 2024, Scleroderma Outreach Northwest and the Seattle Mariners cohosted the annual “Strike Out Scleroderma” Day at T-Mobile Ballpark to raise awareness and funds for those affected by scleroderma. Spearheaded by Scleroderma Outreach Northwest Board Member Dee Burlile, the event featured specially designed “Strike Out Scleroderma” t-shirts and exceeded expectations by selling over 100 tickets!
"It was truly a home run!" Dee said.
Strike Out Scleroderma was attended by SRF’s VP of Programs & Operations, Gloria Blecha, and Executive Director, Joanne Gold; the event helped to spread awareness that extended beyond the ballpark.
We are grateful to Scleroderma Outreach Northwest for the opportunity to participate in this wonderful event.
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The SRF Attends the National Scleroderma Conference | |
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The Scleroderma Research Foundation was proud to sponsor a booth at this year’s National Scleroderma Conference in Bellevue, Washington on July 20th & 21st.
Senior SRF staff including Joanne Gold, Executive Director, Greg Gordon, Chief Medical Officer, and Gloria Blecha, VP of Programs & Operations, were in attendance to connect with members of the scleroderma community and spread awareness about the importance of participating in research.
"We hope to inspire people living with scleroderma to participate in research because their involvement is essential to better understanding and treating this complex disease," says Joanne.
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Create a Lasting Legacy During Make a Will Month | |
August is Make a Will month—a time to reflect on, and take action to, protect the people and causes you care about most. Planned giving can seem daunting and complicated, and it is often overlooked as a powerful form of philanthropy. This is why the Scleroderma Research Foundation has partnered with FreeWill to provide you with a free estate planning tool and resources to ensure you can create a legacy that is personal and meaningful.
When you include the SRF in your estate plans, you are not only signaling your commitment to finding a cure for scleroderma after you are gone, but you are also ensuring our that progress toward a cure will continue in your name.
A will is a powerful way to cement your legacy of philanthropy through planned giving. When you use FreeWill today, there is no obligation to include the SRF in your estate plans. But, if you do, please let us know so we can recognize you as a member of the SRF Sharon Monsky Legacy Society.
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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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