It’s a mother’s “selfish” love that motivates one Chicago Catalyst Fund supporter.
“We want our daughter to feel better,” she says of her family’s recent donation to the Fund. “It’s kind of selfish, I guess.”
Her daughter has a “classic” case of CFS: 20 years ago, at age 17, she got mono from which she never recovered. Looking back, though, she’d had symptoms for years, but no one knew what was going on until they became full-blown with the mono.
“After 20 years, so many things are totally different, it's hard to say,” says the mother about the effects of CFS on her family’s life. “It was very disruptive. We were very focused on her. We cancelled trips. There were long periods where she was bedridden and we were at home full-time, except for work. Like any parent, when you’ve got a child who’s sick and doesn’t seem to be getting any better, you worry a lot.”
She found the balm to her worries in research. She joined the Association “way back when” for the information it offered about CFS, and increased her involvement when the organization helped to recover the CFS research funds misspent by the CDC to support the Association’s advocacy work.
Then she and her husband went to an Association-sponsored “research roundtable” that she describes as “depressing; the speaker talked about how there was no cooperation, researchers didn’t talk to each other, the research was moving in the wrong direction,” she recalls. “The research seemed bleak at that point. Then I read about how the Association’s board had switched its focus to research and I got very excited. It’s absolutely the best focus for patients. All their ideas about no more ‘one and done’ studies, all the different disciplines talking to each other, the database, the biobank – this is what makes us hopeful!”
She knows the value of a dollar and the importance of making each cent of each one work to its fullest capacity, and believes her Catalyst Fund gift will do just that for her daughter and other patients. “We’re aware of how efficient this organization and staff are – they stretch all the time, working tremendous hours doing quality work. We felt like we could stretch, too,” she says, noting that her dream is for the research to double.
“Someone asked me what I’d do if the [Association’s] budget doubled, and I said I’d double the research! There isn’t any other organization that can guarantee any more than this one where your money is going to be put to good use.”
Click here to learn more about THECatalystFUND and to read other Catalyst profiles.
Your gift to THECatalystFUND will help speed discovery and transform the way that CFS research is conducted. Online gifts can be made through our secure donations page at: http://bit.ly/2011fund. Donations are tax-deductible to the full extent permitted by law.