Remembering SRF Board Member Bob Saget |
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Greetings,
It has been nearly a month since that terrible day in January when we learned the crushing news that we’d lost Bob Saget, and it’s still almost impossible to believe. Bob was too big a presence, too much of an amazing friend, too loving and kind of a person, and of course, too unmercifully funny, to think that he could be gone from our lives. All of us at the SRF—along with so many of his friends, family, and fans around the world—are still trying to come to grips with the enormous loss.
What we’ve all read and heard only echoes what we have known about Bob for a long time; he was an amazing person. And yet all the testimonials and tributes in the world could never do him justice. Bob was an important contributor to everything that the SRF has accomplished over the past 20 years; he was the shoulder we all leaned on and the energy and inspiration that drove our work forward in big and small ways.
Bob put his heart and soul into the SRF. His commitment may have started with Sharon Monsky and then his sister Gay’s diagnosis, but his passion and dedication to the mission of SRF grew as he personally came to know so many patients and people whose lives had been touched by scleroderma.
And so, despite our grief—and to honor Bob’s unwavering commitment—the important work of the SRF goes on. We are, always have been, singularly focused on finding a cure for scleroderma. Until that happens, we’ll continue to raise awareness, provide education, and fund the most promising research as we fight for all those who are living with this disease.
In the coming weeks, we look forward to announcing ways in which we’ll invite you to join us in honoring Bob’s legacy, so that he’ll be remembered not only for all the ways he inspired us and made us laugh, but also for being a relentless champion for scleroderma patients and the Scleroderma Research Foundation.
In the meantime, we thank you for sharing your many messages of sympathy, stories of how Bob inspired you, and the meaningful donations you’ve made in his honor to support the work of the SRF. It’s clear that Bob made a huge impact on people all over the globe. All of us at the SRF are committed to ensuring we achieve his dream of one day ending this disease. And we will hold him in our hearts throughout this journey and when it’s (finally) time to celebrate that we’ve found a cure.
Sincerely,
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Luke Evnin, PhD
Chairman, SRF Board of Directors
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Joanne Gold
Executive Director
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In His Own Words
CBS Mornings Interview with Bob Saget
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SRF Board member Bob Saget always went above and beyond to help raise awareness about scleroderma and be an advocate for research to find a cure. Bob's willingness to lend his media influence to help shine a spotlight on this disease has made a huge impact, and continues to increase disease awareness today.
Last summer Bob reached out to his friend, CBS Chief Medical Correspondent, Dr. Jonathan LaPook, to arrange an interview where he could share his family's experience with scleroderma as a way to focus public attention on the disease. The interview was recorded in December and scheduled to air this month but was broadcast shortly after Bob's untimely death on January 9th, in a moving tribute to honor his legacy as a champion for the scleroderma community.
In the interview, Bob spoke about his personal commitment to help scleroderma patients so they wouldn't have to suffer the way his sister did. He shared how he used humor to cope with losing Gay to scleroderma—and turned his focus on supporting research to find a cure:
"I can’t watch what happened to my sister happen to more people. If I could do anything... raising awareness is one of the things that gets you there. I feel like to really do her justice is to really make huge strides in the next decade or two, and to really help these sweet, innocent victims with this disease."
In typical Bob fashion, he managed to deliver some laughs along with a serious message in this candid, emotional, heartwarming interview. It's just one of the ways we hope the world will remember him as a dedicated advocate for the mission of SRF, and our work to find a cure.
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Inspiring the Scleroderma Community |
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Cure Crew members Melissa T. and Linda T. with Bob Saget at CCHC 2019 |
Thousands of Bob's fans, friends, and patients around the world have connected with the SRF to share how Bob impacted their lives and their journey with scleroderma.
In honor of Bob's legacy of impact, the SRF announced a $1.5 million matching gift from fellow board members Dr. Luke Evnin and Deann Wright. All tribute gifts made in his honor will be matched dollar-for-dollar, to further fuel research efforts to find a cure.
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MESSAGES FROM SUPPORTERS:
"It was always a great comfort knowing he was on our side and bringing awareness to a disease where people just want to be correctly diagnosed and have a better quality of life." Jaclyn M.
"May you rest in peace, Bob. Thank you for all the laughs and your love and dedication to SRF. May we all learn from your beautiful kindness that you demonstrated so lovingly to the world." Tamara M.
"I am living with scleroderma, and I am terribly saddened by the passing of Bob Saget. He offered such hope. The matching donation in his honor is incredible." Darlene Z.
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The SRF is committed to raising awareness, providing resources, advancing research, and ultimately finding a cure for scleroderma. Despite the grief of Bob's tragic passing, our work continues in important ways, as highlighted below;
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SRF Webinar Series for Patients |
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At the SRF, research is at the center of all we do to find a cure. Last month, we hosted one of our webinar series with SRF-funded researcher Dr. Zsuzsanna McMahan, Associate Professor of Medicine at Johns Hopkins University, sharing the latest research on GI involvement in systemic sclerosis.
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February is Raynaud's Awareness Month |
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Nearly 90% of scleroderma patients have Raynaud’s symptoms, which is known as secondary Raynaud's phenomenon because it is secondary to the underlying scleroderma and can be an important step in being diagnosed. Please join the SRF in helping to raise awareness by sharing your personal stories, tips, and life hacks related to Raynaud’s.
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Tag us in your social media posts at @srfcure, spread the word using #KnowRaynauds, or email [email protected]. At the end of the month, we will have a random drawing to choose 50 people to receive a pair of mittens as a token of appreciation for those who shared their stories. |
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Take the ILD Awareness Survey |
In September, the SRF teamed up with the following organizations to raise awareness of interstitial lung disease (ILD): The Pulmonary Fibrosis Foundation, Arthritis Foundation, Foundation for Sarcoidosis Research, The Myositis Association, PF Warriors, National Scleroderma Foundation, Sjogren's Foundation, and the Wesco Foundation for Pulmonary Fibrosis. Boehringer Ingelheim sponsored the initiative and all collaborated to host the first-ever ILD Day.
To help inform future educational materials and programs for the next ILD Day initiative, we invite you to take this short five-minute survey about ILD awareness and perceptions. Conducted in collaboration with Boehringer Ingelheim, your responses will be collected by L.C. Williams & Associates, a communications and research firm, and remain anonymous.
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By clicking "Take the Survey," you will be accessing a survey not managed or created by the SRF. |
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