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The Association’s Catalysts Are Transforming Research

In the summer-fall 2011 issue of SolveCFS, we introduced THECatalystFUND, a fund that will speed discovery and transform the way that CFS research is conducted. With the name of the fund, we hoped to illustrate the important role that supporters can play. In science, catalysts are substances that change the rate of chemical reactions. “Positive” catalysts speed a particular reaction.

Within days of sharing the news about the creation of THECatalystFUND with just a few of our most enthusiastic supporters, a rapid reaction was generated and gifts totaling $192,000 were provided to launch the Fund by the time the SolveCFS issue went to press. Our goal is to reach $2 million by year-end to fuel the next phase of our research program.

Gifts of every size are needed to help reach the $2 million goal. Two donor families (who wish to remain anonymous) pledged up to $75,000 to match gifts (up to $10,000 each) as a means of encouraging fellow supporters to be as generous as possible. Catalysts who make gifts or pledges at the $10,000 level or more receive special recognition and benefits.

All donors to THECatalystFUND will be provided exclusive updates from Association leaders, members of the Association’s Scientific Advisory Board and funded investigators. Web-based programs offered only to Catalysts will help keep donors personally informed about the progress being made across the research field. In addition, Catalysts will receive special recognition in Association publications and events. (Anyone who wishes to remain anonymous is welcome to do so.)

Throughout the month of December we’ll provide you with updates on the progress toward our $2 million goal and we’ll introduce you to Catalysts who were inspired to support the Fund’s growth. We're delighted that these individuals have allowed us to share their stories:

Anonymous, of Chicago, Il, has a daughter with 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. 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. Meet Anonymous...
Anonymous, of Waterford, CT, planned to travel in 2010 and so did her son. He contracted a giardia infection in Asia that didn’t respond to treatment and within months both their lives changed. “He’s had to move home and put his life on hold,” explained the mother. They are both hoping research will provide answers. “The time is now! Thank you to the CFIDS Association and to the donor families who made this possible!” Meet Anonymous...
Mike Atherton of Alexandria, Va., his wife Christine and parents Sharon and Harper, have made supporting The Catalyst Fund a family affair. Christine’s illness began suddenly in 1995, but she was able to keep up a modest level of activity until 2008 when she was diagnosed with non-Hodgkin’s lymphoma. Treatment followed and she saw some improvement, but then, this spring, her CFS got much worse. The family rallies around Christine and the Association’s “broad-spectrum” approach to research. Meet Mike...

Jeffrey Blum, M.D., of Cornelius, N.C., thought he had “the Blum virus” when he got sick during his last month of medical school. That was 40 years ago. He’s been fortunate to continue his profession but still struggles with post-exertional relapse. “Each time you give, you increase the return on investment. The addition of Dr. Vernon, a professional who’s looking at the research projects and coordinating them – that’s what’s fabulous. That’s what impressed me.” Meet Jeff…

Hayden Boyd of Davidson, NC, is motivated by a father’s love. His daughter, Anne, got a bad flu two years ago and didn’t recover. “A catalyst is something that speeds up a reaction in chemistry, and it seems to me that speeding up all these folks working on CFS is a very good thing to do. I want my daughter to get well and have a good life.” Meet Hayden...

Melissa Boyer of Amarillo, TX, had it “all” in her 20s until a confusing illness hit in 1995. She wasn’t diagnosed until five years later, but then her doctor put her in touch with the Association so she could learn more and find ways to cope. “My hope is that the Catalyst Fund will contribute to the understanding of the biology of our illness and speed up the process in finding meaningful treatments and eventually a cure for CFS.” Meet Melissa...

Linda Cohen ofNew York, NY, was a regular at Studio 54 in her younger, healthier days. Twenty years ago she was diagnosed with CFS and her life took a different path. She lives alone, in survival mode. Research is her hope. The Catalyst Fund appeals to her “because it’s the only way we’re going to find out what causes CFS, what makes us feel better and what cures it." Meet Linda...
Claire of San Francisco Bay Area, CA, became bedridden at age 29, stricken by debilitating fatigue, muscle pain and brain fog. “Among CFS organizations, the CFIDS Association funds the highest quality scientific research," she says, noting that she bases this decision on her own education in the biological sciences and research methods in several social sciences at a top research university. Meet Claire...

Amy Divine of Boulder, CO, has been sick since a sudden-onset flu in 1986, Divine says her life has “become much, much smaller. I was living in New York and working in television. I had to give up everything, my career, and move to Colorado,” she says. “But I did have a family and could start a couple of small nonprofit organizations. Now I’m on the board of the Association, and that’s where I’ve chosen to devote my energy.” Meet Amy...
Beth Garfield, J.D., of Los Angeles, Cal., got sick in 1985 while on vacation. It took four years to get a diagnosis of CFS, but she also found a treatment that offered relief for 22 years. A relapse this February gave her reason to get involved again. “Even for people who do well for years, CFS is always there – and there’s always the possibility of a relapse,” she says. “We can either give in to it and live our lives with CFS, or we can fight to find a cure. For me, the choice is clear.” Meet Beth…

Claudia Goodell of Albuquerque, N.M., slid into a gradual progression of illness following a viral onset in 1985. It was 15 years before she was finally diagnosed. She’s combined her passions for biking and the Association by founding a 24-hour endurance bike race to benefit CFS research. “It’s my opinion that solid research is the key to finding answers about this illness.” Meet Claudia…

Denise Lopez-Majano of Chester County, PA, lives in a quiet house in spite of the fact she has two teenage sons at home. Matthew and Alexander both have CFS. They’re both sensitive to noise, light and odors, so they don’t make the kind of ruckus their peers do. Denise and her family have supported the Association since 2007. She believes, “It’s one of the best investments possible!” Meet Denise and her sons…

Kris McMenamin of Arlington, Va., calls The Catalyst Fund “a game changer.” “Anybody facing the challenge of cross-system intervention should be looking to do what the CFIDS Association is doing.” She got involved at the request of a friend, on behalf of another friend with CFS. But she sees returns that go beyond those affected by CFS. “I’m hopeful that whatever is funded will seed benefits for other diseases too.” Meet Kris…

Anne Örtegren of Stockholm, Sweden, wants to steal her life back from CFS. “I am home-bound, barely capable of getting up to have dinner. ME/CFS has stolen everything that was my life.” Although she just gets by with two small disability allowances, she made one of the first gifts to the Catalyst Fund. “I know small gifts matter too. We need to start helping ourselves. Please join me in contributing with a small gift.” Meet Anne…

Robert Radovich from Las Cruces, NM had CFS come to him late in life. The 84-year-old retired postal worker suddenly began having problems sleeping in the early spring of 2009. He was diagnosed with CFS when he went to the doctor after not being able to shake the first cold. He asked for a viral count to be done and she tested him for Epstein Barr virus. “She said I had CFS. I never thought I’d get that,” he says. He contacted the Association and began receiving the “SolveCFS” publication. It was there that he learned about The Catalyst Fund. “I made a donation to help sustain the research, in the hope that they’ll come up with something.” Meet Robert...
Lynn Royster of Dallas, TX, recalls how her family changed forever one day in 1986. Her son, Patrick, got the flu and never recovered. She connected with the Association and found its information to be “accurate, always thoughtful, never hysterical.” Supporting The Catalyst Fund continues her tradition of Association support. “There is so much on the horizon, so many possibilities. My son’s illness affected my life and my family’s life immeasurably. Anything we can do to help him helps our family and helps everybody else.” Meet Lynn…

Dikoma Shungu, PhD,of New York City, demonstrates his commitment to CFS in the MRI laboratory he runs at the Weill Cornell School of Medicine, and by donating to The Catalyst Fund. “I have seen how debilitating this illness can be and am convinced that it is for real. The only way we can ever to hope to understand the causes of this disabling condition is through research, which cannot occur without financial support from all of us.” Meet Dikoma...

John R. and Patricia Ellen Smith of Fresno, C.A., 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, 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. John says “when we contribute to CFIDS research it shows that we, the CFIDS families, are not giving up. Meet John and Patricia...
Marian Sonnenfeld of Wellesley, M.A. got sick 21 years ago. Sonnenfeld’s illness onset, like many others’, was sudden. “It came along with a flu-like illness that several people in my family got. Everyone else got well and I got left with this,” she explains. “It started with a sore throat and blossomed into a full-blown flu.” What appeals to her about The Catalyst Fund. “This is money that is specifically directed toward research and directed toward changing the understanding of the illness. If we can find clear evidence of the mechanism of CFS, then we’ll have clear evidence of organic, physiological affects in the body that will lead to better treatments,” she says. Meet Marian…

Michael Spain of Carmel, NY, had an acute onset of CFS on March 13, 1990. He values the information provided by the Association. “The information and its gathering and distribution has been fantastic. There’s one central place that’s watching over everything.” He sees his gift to The Catalyst Fund has a responsibility. “For anybody who’s sick, or has a family member who’s sick, we should do everything we can to support this. What could be more important?” Meet Michael…

Jennie Spotila of King of Prussia, PA. has been sick more than 17 years, this former Association board chair has supported the organization nearly as long as her illness has lasted. “I was working as an attorney in Philadelphia and woke up one morning with a sore throat. Like other Catalysts, she is all about the research: “Research is the key that unlocks the door to my health and the health of millions of others. Research is the only thing that can deliver objective diagnosis and effective treatment. Research is our only hope, and there has been far too little of it.” Meet Jennie...

Amy Squires of Alexandria, VA, learned about CFS when her oldest friend got sick 17 years ago. They went from hiking together to knitting together to accommodate her friend’s energy and physical limitations. “I want to do whatever I can to be engaged in the research and progress toward a cure,” says Squires. Now she serves on the Board of Directors and supports The Catalyst Fund through monthly and special gifts. “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!” Meet Amy...

Terry Westerman from San Antonio, TX got the flu in December 1993. One week later, she was diagnosed with walking pneumonia and says nothing was the same after that. “To say that CFS changes your life is a gross understatement.” Westerman is convinced that research is the only thing that will return her life to her. “I’m 100 percent behind the Association’s research-focused strategy! She likes the Association’s orderly approach to research, particularly Scientific Director Dr. Suzanne Vernon’s analysis and synthesis of various methods and focuses of CFS research. Meet Terry...
Christine Williams of Chevy Chase, MD., got sick in August 2008, “I just woke up one morning with a terrible, flu-like illness – fever, chills, sore throat, swollen glands. I said, ‘Oh my gosh, I’m really sick!’ It was the middle of the summer and I just assumed I’d get well but I never felt good again.” Christine is also one of the Association’s newest board members. She appreciates what she calls the organization’s “pragmatic” approach to narrowing the focus to research, viewing it as a way to move the research forward and to educate and link the medical community to CFS. Meet Christine...