"I can't imagine the Scleroderma Research Foundation without him and his energy," Luke Evnin, Chairman of the Board, said Monday.
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Evnin says it was a delight to work with Saget for the last 25 years. He says they were texting each other just a couple days ago, that his death came as a complete shock.
"I never imagined having to do this without Bob- going forward- it is just the saddest thing."
Evnin says Saget's sister died of this rare, autoimmune disorder that causes inflammation of the skin and in other areas of the body. The attention that Saget brought to the cause made a huge difference in their efforts.
"We have been able to transform what we do with the money he has raised."
He says it was a delight to work with him on the board.
"He wanted it to be fun and a family and he was able to make that happen. Bob walks into the room and the room changes instantly."
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Evnin says they are distraught, but will keep his memory alive as best they can.
"We are going to miss Bob every day. We are going to make him proud. We are going to carry his work on without him."
He hopes that people will remember The Scleroderma Research Foundation, even though they have lost their famous spokesperson.
"I believe Bob would say 'if you want to honor my memory, this is the thing that has been most important to me, outside of my family, over the last 25 years. Please give to the SRF, this is my legacy.'"