Our most difficult task as a friend is to offer understanding when we don't understand. Robert Brault, writer
“My oldest friend has been sick for 17 years and that’s how I came to know CFS,” explains Association Board Member Amy Squires. “The mechanics of friendship – hanging out and doing things together – totally changed. When she was healthy, we went on camping trips, hiked in the mountains, went to movies and out to dinner, walked the National Mall and did the museums. After she got sick, all that changed. Most of the time I spend with her is spent in her home. Outings are very rare – maybe a meal, maybe just coffee. Now we knit together.”
Squires began working with the Association in 2005, providing pro bono consulting when the Board was revising its strategic plan, and attended Lobby Days with her friend and in her honor before joining the board of directors.
The Association’s transformative approach to research appeals to her. “I’ve learned a lot about CFS through my friend’s strength as she’s fought the illness and learned her boundaries. It’s made me want this to be solved and want to do whatever I can to be engaged in the research and the progress to a cure,” says Squires. “The Association puts in place the missing pieces and critical links to research. One example is the SolveCFS BioBank. Without these well-characterized samples, it’s hard to tell who’s being studied and how to interpret the findings, which really limits the value of the research.The BioBank is an example of how the Association is taking a comprehensive, transformative approach to research than is more the norm in other disease organizations.”
Squires makes regular gifts through the Association’s Chairman’s Circle program and made another to support the Catalyst Fund. “I’ve continued to increase my gifts, just in recognizing the needs and the value. I’ve certainly not had stock returns perform like this! If I could re-direct that portion of my taxes that goes to the NIH and the CDC, I certainly would!” she says. “I’ve seen the Association’s talented and professional staff squeeze blood from a stone, using money so efficiently and so effectively. Money spent with the Catalyst Fund will advance the research in a way nobody else is doing.”
Her hopes for the Catalyst Fund are simple and born out of her deep friendship: “I really want it to take it to the next level. The Association’s grant program in 2008 set the bar and demonstrated what can happen with a little money. Let’s raise big money and make big things happen!”
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.