The Cfids Association Of America, Inc.

Rating: 4.14 stars   80 reviews

Address:

6827 Fairview Road Charlotte NC 28210 USA

Mission:

The mission of the cfids association of america is for me/cfs to be widely understood, diagnosable and treatable by: identifying safe and effective treatments for me/cfs; strengthening the me/cfs community by empowering patients and engaging greater numbers in our cause; and aggressively expanding funding for research that will lead to approved treatments and cures for me/cfs.

Results:

Since 1987, the Association has invested more than $30 million in programs to end the pain, disability and suffering caused by CFS.

Programs:

Research - the cfids association has worked over the past 5 years to invest our constituents' donations in our research institute without walls (riww). Our innovative riww continues to provide early funding to the most promising researchers, using our solvecfs biobank to put patients at the center of that research; pairing patient samples and clinical information with the brightest investigators from the best medical institutions in the world. The research institute without walls focuses on: identifying disease subtypes and biomarkers (45%), developing disease-modifying treatments (25%), defining me/cfs (20%) and software tools (10%). Identifying disease subtypes and biomarkers - me/cfs is a multifaceted and complex disease. To discover the cause and effective treatments we must break down the complexity and identify groups of patients that are similar to one another. How is that done? With blood and clinical information. Blood is a 'molecular biopsy' that can provide clues to biology from all parts of the body. The solvecfs biobank harnesses the power of patient information and patient samples. The biobank has attracted some of the brightest investigators from the best medical institutions including harvard, columbia, johns hopkins, university of alberta, nyu langone medical center and university of toronto. Developing disease-modifying treatment - while funding cutting edge research to identify a cause, we are also identifying treatments that can help restore function and alleviate symptoms of me/cfs. While we work towards a cure we must develop disease-modifying treatments. Defining me/cfs - diseases must be clearly and unambiguously defined so that causes, and the cures can be discovered. We partnered with lenny jason of depaul university to use the data from the solvecfs biobank to help refine how me/cfs is defined. This research will help identify the "core signs and symptoms" of me/cfs so that the disease can be measured the same way by all investigators. The cfids association of america is working on a partnership with a real-time online platform where people can connect with fellow patients and expand our capacity for patient centered outcomes research through their shared data. The data can help researchers better understand the nature of the illness, detect patterns, and develop more effective therapies. Partnering, combining,g and growing our community, we will create a big data set of "well-defined and reliable" patient-reported outcome measures to provide evidence of treatment benefit. Managing, understanding and using this kind of big me/cfs data will be key to innovating the effective treatment for me/cfs patients. Software tools - we have partnered with a biotech company to build a digital library - one centralized knowledge base - of all the me/cfs medical literature and all open source biological data sets. This digital library brings the information to one place and translates it into a standard form. Software is under development to integrate this knowledge in order to generate theories that can lead to therapies.

communications and engagement - the association knows that we can't achieve our goals without an informed and connected patient population. Patients are a key ingredient to making me/cfs understood, diagnosable and treatable. To that end, we are working to empower patients with more information through our catalyst cafés, e-newsletters, the solvecfs chronicle publication and online. More than a quarter of a million people visited the cfids association website last year, most searching for answers, looking for hope. The association holds the most extensive library of patient information and resources, reports on the latest updates and research opportunities and helps patients feel less alone. In an effort to make this information easier to find, readily share-able and more deeply engaging we launched a new web presence which replaces the solvecfs biobank micro-site, cfids. Org and the research1st blog with one synthesized online presence. The synergy achieved through www. Solvecfs. Org will reach more patients, engage more in the research process, and better involve all me/cfs stakeholders in the important work of the association. Early numbers tell us that people are staying on the site more than twice as long as they did on the old website - a key indicator that visitors are finding what they need in a more welcoming format. We continue to hold catalyst café events across the us. Meeting in homes and offices, restaurants and community rooms, association staff members are bringing details about our research program and its impact to people who are most affected by me/cfs.

2014 Top-Rated Nonprofit
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(704) 364-0016
www.solvecfs.org

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Reviews for The Cfids Association Of America, Inc.

Rating: 5 stars  

2 people found this review helpful

We are very impressed with this organization's wise use of funds that are donated to them. Their actions support a resolve to use the money in the smartest way possible to understand ME/CFS and contribute to medical advances that we can hope will one day lead to a cure.

Chronic Fatigue can be a devastating illness for patient's and their families. The Solve ME/CFS Initiative has offered real hope that lives can restored.

 
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Rating: 5 stars  

1 person found this review helpful

This is an amazing organization with a smart, caring board. I feel like this organization gives so much hope to the people they serve.

 
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Rating: 5 stars  

1 person found this review helpful

I strongly support the Solve ME/CFS Initiative (SMCI) -- their mission -- their advocacy, their research, but most importantly the help and hope they continue to provide to countless patients and their families. This is what a good good non-profit organization has to do. They have to with great purpose and meaning educate the general public; help establish a sufficient level of quality research; and be a strong voice for those patients and children who struggle each and every day with a misunderstood and often poorly treated medical condition. My family personally knows a family that has found support, resources and a sense of community from Solve ME/CFS Initiative (SMCI). We have seen first-hand the difference that this advocacy organization has made in their lives. Generous donations are critical to the success of this outstanding organization so make one today! Duchy Trachtenberg, MSW

 
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2 people found this review helpful

My sister has struggled with CFIDS for more years than I can count and has flown all over the United States trying to get the optimum treatment. I have watched how this disease has impacted her. She talks about this organization and all that it has done for her in finding information so that she can understand what is going on with her and help to find ways to make her family understand as well.

Keep up the good work!

Abby Eibel, MA.Ed, LPC/MHSP

 
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1 person found this review helpful

I am extremely grateful for SMCI and the work they are doing to help solve the heartwrenching disease called CFS. My daughter has suffered for over 6 years with CFS. Knowing that excellent, trustworthy research is being funded and supported by SMCI gives us hope that a treatment will be found. This organization is doing essential work for ME/CFS sufferers around the world.

 
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Rating: 5 stars  

The CFIDS Association of America has provided me with invaluable information over the years. Without the guidance of the research done, the research collected and the reasearch shared we would have been like a ship without a rudder.

If I had to make changes to this organization, I would...

Give them more grant money for more research.

When was your last experience with this nonprofit?

2014

 
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Rating: 5 stars  

I have a very close friend who has depended on your organization for years. She has often told me how helpful it has been for information and support. Struggling with this illness is stressful and sadly, often unrelenting.

I am hopeful that the work you do will continue.

 
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1 person found this review helpful


CFIDS is a huge problem that needs our attention , affects many and ruins lives. This org. Does the necessary work that no one else is doing. Smart dedicated people trying to efficiently solve big problems. I am pleased to give review and make donations when I can.

 
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1 person found this review helpful

Our family knows firsthand the debilitation of CFIDS, now better known as ME/CFS, as both my husband and oldest daughter suffered from it for years and still battle lingering effects and occasional relapses. Too little is known about the disease and especially about ways to cure people so we have been deeply impressed by the decision to devote far more attention to research and less to patient advocacy. Of particular interest is the idea of a research institute without walls, that is, funding focused, useful research at different institutions under the coordination of a scientific director. This approach seems excellent value for money and offers the promise that research by different scientists in different locations can be tapped to finally provide insights into solving and curing people of this debilitating disease.

 
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1 person found this review helpful

I have been following the CAA ((Solve ME/CFS) for decades. I can rely on SolveME/CFS to take a rigorous approach to the issues facing the ME/CFS community and produce thoughtful analyses of them.

I have been impressed throughout with their dedication to producing innovative research projejcts Their research program has supported several pilot projects which have opened up vital areas of ME/CFS research. One was their early support of using exercise testing to highlight abnormalities - an approach that is used throughout the field now. From their Biovista to their Logosomix to their recent exercise-cognition-fMRI study, Solve ME/CFS is on the cutting edge of innovative research in this field.

 
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