The CFIDS Association of America, Inc.
Rating: 4.09 stars 80 reviews
Location: PO Box 220398 Charlotte NC 28222 USA
Results: Since 1987, the Association has invested more than $30 million in programs to end the pain, disability and suffering caused by CFS.
Programs: The Association is proud to lead national efforts in CFIDS awareness and education, public policy and research and we are grateful to those who support our work. The CFIDS Association offers information and resources to patients, family members, caregivers, support groups, media professionals the general public and health care professionals. The Association focuses its resources on research, policy and communications that will advance understanding, diagnosis, treatment and prevention of CFS. We are grateful to all those who support our vital work.
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I'm committed to this organization because it is our best hope for solving this devastating illness. The staff are committed professionals and the board are highly capable and knowledgeable. I fully support their work.
1 person found this review helpful
After my sister was diagnosed with ME/CFS, i went looking for organizations that were working to solve the mystery that is this disease. I was surprised at how little awareness there was of the disease, but was very excited to find the Solve ME/CFS initiative (CAA at the time) and to see that they were working hard to meet their mission of making ME/CFS understood, diagnosable, and treatable. What really sets SMCI apart from other organizations i've worked with is the laser focus SMCI has on leveraging patient centered research to find a cure. I'm honored to serve on the board of this amazing organization working to make my sister's and a million other people in North America's lives better.
4 people found this review helpful
My family first found this organization 25 years ago when we needed information for our family member who was diagnosed with ME/CFS. We were greatly encouraged by the organization's 2008 decision to focus on funding cutting-edge research to be able to diagnose, treat and cure this illness. We believe that the organization's funding of the best scientists, along with creating infrastructure like their biobank which makes it possible for more researchers to study ME/CFS, offers the very best hope for patients and their families. Since 2010 I have served on the Board of Directors and have continued to be impressed by the board's and staff's dedication to the mission of solving this terrible illness. This is an effective, well-run organization that deserves support.
1 person found this review helpful
In 1993 I became ill with a flu I could not shake. The then CFIDS Assoc of America was a beacon of hope and the only source of reliable information I could find. Over the years, I contributed and continued to rely on the Chronicle and SolveCFS.org for objective information. Then last decade, approved wholeheartedly as the organization crystallized it's commitment to "a world free of ME/CFS." Since then, a strategy of using seed grants to young and/or "new to ME/CFS" researchers has accelerated the pace of research. Recent results include groundbreaking work in epigenetic changes, the characterization of PEM, and the immune signatures, to name a few. A phenomenally high proportion of the Solve ME/CFS Initiative's seeded researchers receive major follow-on funding grants. This success comes from infrastructure and talent this organization has strategically and cost efficiently built, and tools to allow for more efficient and effective research. I was so impressed, I began volunteering for the organization in 2011 and joined the board in 2013.
If I had to make changes to this organization, I would...
Increase funding ten-fold.
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2 people found this review helpful
I have depended upon Solve ME/CFS (formerly CFIDS) for objective information since I chaired the NIH ME/CFS Working Group. However, their focus on biomedical research for ME/CFS is why I've continued to rely on their news and joined their Board. Solve ME/CFS brings new scientific talent to the field and helps them get started. New, exciting initiatives are in the pipeline too. We need organizations like Solve ME/CFS to help connect patients/advocates/general public with the research communities. They leverage their strengths by working with other ME/CFS organizations to make each donation stretch farther and have increased impact on curing this disease. This organization is well worth my time and effort.