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Bob Saget’s Legacy: He Championed Research For The Rare Disease That Took His Sister’s Life

Bob Saget died on the birthday of his late sister after spending years fighting for research of rare disease that killed her.

The world is still in shock after “Full House” actor Bob Saget was found dead on Sunday in a Florida hotel room at the age of 65. Now, it’s been revealed that he died on the birthday of his late sister, who died young from a rare disease that he spent years championing research for. 

Saget Dies On Late Sister’s Birthday

Bob Saget died on January 9, which would have been the 75th birthday of his sister Gay, who passed away in 1994 at the age of 47.

She lost her life to scleroderma, which led to Saget spending the rest of his life fighting to find a cure for it according to Deann Wright, a board member of the Scleroderma Research Foundation (SRF). Saget was also a member of the SRF board.

“Bob felt that his sister did not have a good medical experience. It was hard for her to get diagnosed, which was much more common in those days, in the 90s, and there were fewer options and there was less understanding,” Wright told “Good Morning America.”

“It did motivate him a lot to try to bring awareness to the disease and to help drive research and awareness to make sure that that didn’t happen again,” she added. 

Related: Candace Cameron Bure Pays Tribute To Long-Time Friend Bob Saget

There is no cure for scleroderma, a disease that affects 300,000 Americans and is caused by a combination of factors that include hormone changes, immune system problems, environmental triggers, and genetics.

It can lead to patches of tight, hard skin and can affect the areas just under the skin, and it can prove to be fatal in some people. 

Saget Spoke About Sister Just Before His Death

Hours before Saget was found dead, the foundation shared a statement he had issued in honor of his late sister’s birthday. 

“My heart goes out to all who have lost a loved one to this disease,” Saget wrote. “No one should have to suffer as Gay did, which is why I’m committed to finding a cure and a proud board member of the Scleroderma Research Foundation.”


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A post shared by Scleroderma Research Fndn. (@srfcure)

Wright described Saget as a “rock” who went above and beyond to support board members and staffers at the foundation. He also played a huge role in recruiting donors and researchers to join their cause. 

Related: Lori Loughlin Issues A Rare Public Statement About Bob Saget’s Death

‘Bob Was So Generous’

“We’re a very small organization, so individuals can have a huge impact, and Bob was certainly one of those people,” Wright said. “Bob was so generous, and when someone gives so freely of their time and their talent and their compassion and goodwill, it sets the tone, and others who have that inclination are really ready to join in.”

“As a community with a life-threatening, rare disease, we face a lot of losses, and he was always there for people,” she continued. “And he was always willing to lend his shoulder.”

“Bob really had a super deep understanding of how humor could help you get through the worst times of your life,” Wright added. “He always was ready with a different way to see things and a different way to use his humor in a really gentle way to help out.”

While Saget’s official cause of death has yet to be revealed, police suspect he died in his sleep of a heart attack or stroke. He will be dearly missed by his family as well as by his millions of loyal fans.

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