Bob Saget: A Life of Service to Those Suffering With Scleroderma
Note: This story was updated Jan. 25 to clarify that the $1.5 million dollar matching grant in honor of Bob Saget was provided by Scleroderma Research Foundation board members Luke Evnin and Deann Wright, not the foundation itself.
The late comedian Bob Saget sparks many memories for those of us who grew up watching the TV show “Full House.” On the show, which aired from 1987 to 1995, Saget played the character of “America’s Dad,” Danny Tanner. Saget, who died on Jan. 9, was a beloved comedian, director, movie and television star. He also was a loving brother who lost his older sister, Gay, to scleroderma.
Gay Saget was diagnosed with scleroderma in 1992 and died of the disease two years later, at age 47. To channel his grief over her death, Bob directed a made-for-TV movie based on her life, titled “For Hope.”
Bob was a staunch advocate for those of us suffering from this insidious disease. He was an active board member of the Scleroderma Research Foundation (SRF), where he helped to organize the foundation’s annual fundraising event, “Cool Comedy, Hot Cuisine,” which raised over $700,000 for scleroderma research last year. According to Scleroderma News‘ Steve Bryson, the event has raised about $25 million for research over the past few decades.
Coincidentally, Bob died on his sister’s birthday. Gay would have turned 75 this year.
In honor of Bob’s contribution to our cause, SRF board members Luke Evnin and Deann Wright agreed to match every dollar donated in his memory, up to a total of $1.5 million.
With his untimely death, I wonder whom the baton of scleroderma fundraising and advocacy will be passed to next?
Rapper, producer, and actress Queen Latifah is another celebrity whose life has been affected by scleroderma. Her mother was diagnosed with the disease in 2013, and died five years later. In an interview last year with Parade, Latifah talked about her mother’s struggles and decline in health.
“When my mom was diagnosed with … scleroderma in 2013, we’d never even heard of it before,” she told the magazine.
While I’m not a celebrity, I also hadn’t heard of the disease when I was diagnosed four years ago. Like Bob Saget’s sister and Queen Latifah’s mother, I’d gone to many different specialists to find out exactly what was wrong with me. The time it takes to receive a definitive diagnosis can be deadly.
There currently is no cure for scleroderma. Instead, we must manage our symptoms, which means that receiving an early diagnosis is crucial. Lifesaving measures could occur earlier with proper research, adequate funding, and the training of medical personnel. With continued research, new therapies could provide comforting measures for those of us who suffer from scleroderma’s debilitating effects.
Bob Saget’s death should be a personal call to all who suffer from this disease. We must speak up and speak loudly, raise awareness and funds, educate people, and tell anyone who will listen about this disease. We must be active in our advocacy.
I was having a particularly rough day when I heard of Bob’s untimely death. Sitting under a heated blanket trying to warm up my aching body, I felt like I had lost a friend.
Only a few celebrity deaths have brought out intense emotions in me. This was one of them. I fear the momentum for scleroderma advocacy and awareness may begin to wane because of it.
So, I want to take a moment to thank you, Bob Saget. While we never knew each other, because of scleroderma, our lives will be forever intertwined. Your contributions are invaluable to our bereaved community.
You used your celebrity status to honor your sister’s legacy and raise awareness, and you changed millions of lives with your efforts. Fly high, my friend. Your own legacy lives on.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.