Please join us for
on September 21, 2022.
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Hosted by Jeff Ross, John Mayer, & Jimmy Kimmel
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Event Co-Chairs:
John Mayer, Kelly Rizzo, Jeff Ross, and SRF Board Member Susan Feniger
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This year’s Cool Comedy • Hot Cuisine will feature some of the world’s most talented comedians and performing artists as we remember Bob—not only for how he made us laugh, but also for being a relentless champion for all those affected by scleroderma.
His legacy will live on through all of us as we celebrate Bob by sharing love, laughter, and really incredible food—all to help find a cure for this disease.
When: Wednesday, September 21, 2022; 6:30 PM cocktails, 7:30 PM dinner
Where: The Beverly Wilshire Hotel, 9500 Wilshire Blvd., Beverly Hills, CA 90212
Sponsorships: From $150,000-$1,000
Tickets: $500 (limited quantity available)
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2022 Research Challenge Extended |
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Will you join the SRF Research Challenge and help drive scleroderma research forward to help everyone affected by this disease? Thanks to a generous gift from SRF Board Chair, Dr. Luke Evnin, and Research Chair, Deann Wright, $50,000 of gifts to the Research Challenge has already been matched dollar-for-dollar.
Luke and Deann were so inspired by how you all rose to the challenge that they are now offering another $25,000 matched dollar-to-dollar for another month, through August 15th. Please join them in helping to transform the landscape of scleroderma research – and double your impact – by making a gift to the Research Challenge today!
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You Can Golf for a Cure in San Diego, on Monday, August 8th |
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Longtime sports agent and founder/CEO of Elfus Sport Management Bill Elfus has two women in his life that are battling rare diseases that currently do not have a cure.
His mom has been living with scleroderma for 25 years, and his wife with Fibromuscular Dysplasia since 2019. Bill says, “As I watch these brave women working through their diagnoses, I can’t help but think how blessed we are to have access to the top care and resources available to them. But many patients aren’t as lucky.”
This is why he's launching the inaugural Elfus Sports Management Foundation Charity Golf Tournament. He explains that “by financially supporting the Fibromuscular Dysplasia Society of America and the Scleroderma Research Foundation, we can help people like my wife and mom to receive the care they need."
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Scleroderma Canada Will Host Their Annual Conference This September |
Our friends in the north at Scleroderma Canada, a nonprofit serving the Canadian scleroderma community, will be hosting their 20th bi-annual Scleroderma Conference on September 16-17, 2022 in Niagara Falls, Ontario. This event is for people who live with scleroderma, those who care for them, and researchers. All sessions will be hosted by medical professionals and industry leaders. |
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#SayScleroderma: Two Stories from Scleroderma Awareness Month |
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31 years ago, Chip had “what I thought was an ingrown fingernail on my right index finger.” A game of golf helped him realize it was something far more serious—scleroderma. |
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Though the challenges of scleroderma persist, so does Kate. As she says, “Most people assume because I suffer from this disease, I’m fragile. I’m not.” |
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Remembering Bob Saget through a New Podcast |
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Check out Radio Rahim's moving podcast interview with SRF Board Member Bob Saget on Luminary’s Til This Day with Radio Rahim. In the interview, Bob openly shares about the loss of his sister Gay to scleroderma. Luminary has also generously offered a matching gift opportunity in honor of this interview.
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SRF Board Member Sharon Dobie on Mogil's Mobcast |
SRF Board Member Sharon Dobie. was recently featured in Mogil's Mobcast, a podcast hosted by Ann Mogilevsky that provides the scleroderma community with meaningful information from leaders in the field.
In the podcast, Sharon shares about her personal experiences with scleroderma through her son Matt, who passed away from its complications in 2017. They also talk about Bob Saget's impact as an SRF board member and how the SRF stays singularly focused on finding a cure.
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Project Scleroderma Premieres a New Documentary |
Project Scleroderma, a longtime partner organization of the SRF that raises scleroderma awareness globally, recently premiered their new documentary. It's called Run Greg Run and tells the incredible story of scleroderma patient Greg Cohen and his inspiring athleticism.
At the premiere event, they helped raise funds for scleroderma research by directing attendees to give to the Scleroderma Research Foundation.
Next, they're working to submit Run Greg Run to film festivals, and we can't wait until the film is available to stream. A big thank you to all involved for their efforts to raise awareness and funds for research!
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In Memoriam: Former SRF Board Member Dan Morton |
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The SRF mourns the loss of former board member Daniel Morton, who passed away last month. He joined the board of the SRF in the early '90s, after reading a New York Times article featuring SRF founder Sharon Monsky.
"He was the kind of person who would be moved by a newspaper story of Sharon Monsky’s courageous fight, seek her out, join the fight for a cure, and stay with it for over 20 years until he retired," says SRF Board Member Deann Wright. "Although Dan had no personal connections to scleroderma other than those he forged at the SRF, he was a driving force on the SRF board for decades."
SRF Board Member Susan Feniger remembers how "his admiration of Sharon was just surreal. Dan was our guiding light, a force that was always there for us in the beginning days."
We'll always remember Dan's leadership and lifelong passionate commitment. "All of us at the SRF are grateful to have had Dan and his generous spirit in our lives and working with us on our mission to cure scleroderma," Deann says. "Dan, you will always be with us."
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