John R. and Patricia Ellen Smith
Fresno, C.A.

The Smith family’s Christmas photo, taken the day John Smith’s children and grandchildren received The Catalyst Fund donation gifts. Patricia is pictured in a navy-blue blouse kneeling on the far left, while John is wearing a burgundy sweater and standing on the far right.

It truly was the Christmas gift that will keep on giving.

“Each Christmas, my wife Lorraine and I would help our daughters with a financial gift to help them cover their Christmas expenses,” explains John R. Smith. “I now realize they no longer need this help, so I gave the money to the CFIDS Association of America in theirs and their children's names.”

His generous $4,500 donation to The Catalyst Fund was divided into eight $500 gifts for his children and grandchildren, given in honor of daughter Patricia, who has been sick with CFS for more than 20 years.

Patricia graduated college with honors in political science, economics and philosophy. She was athletic. He last job was managing the City of Fresno’s mayor’s office. “It feels like I died. I became what I call a ‘CFIDS Zombie.’ I remember passing calculus in high school, but now simple math is difficult,” she says. “You see, ‘zombies’ aren’t good at math, nor are we good at anything complicated. There’s just easy reading for me now, with a fickle chance of retaining the information.”

She mourns her former life. “I've forgotten what it feels like to have energy. Each day, waking up still tired as I was when I went to bed has erased that memory. I used to fall asleep easily, and now I consider waiting three hours for sleep to be a good night,” says Patricia. “The wait can be up to eight hours, and when coupled with an inability to read, feels like what forced sleep deprivation is, torturous on body, mind and spirit.

“Without this illness, I would have spent these last 20 years establishing a career that did have a promising beginning and had a family of my own. Adopting at least one child had always been a dream of mine. A few months ago, I turned 50, and I couldn't celebrate – only grieve for what I might have accomplished.”

The Smith family has supported the Association since 1990. “[Founder] Marc Iverson wrote years ago that ‘the vast majority of us grapple with this disease, learn from it and survive it. But for too many patients, CFIDS steals so much of their lives that life is simply not worth living,’” notes Patricia. “I believe Marc has created a true lifeline that has grown strong, under the dedicated leadership of Kim McCleary, to help hundreds of thousands of families. It has become the heart and brain of our community that enables us to help one another. I'm happy to give what I can, and grateful to feel useful.”

John says an issue of Solve CFS, the Association’s print publication, made him aware of the research supported by the organization and its efforts to move CFS to the forefront of both doctors and the general public. “Hopefully, research will not only find what causes CFIDS, but help prevent it and bring some benefit to those already suffering from it,” he says. “When we contribute to CFIDS research it shows that we, the CFIDS families, are not giving up. If more people could see the courage and effort it takes for CFIDS patients to day-by-day survive and stay loving and caring people, you would have all the money needed to finally find the answer to end this terrible illness.”

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