The Cfids Association Of America, Inc.

Rating: 4.14 stars   80 reviews

Address:

PO Box 220398 Charlotte NC 28222 USA

Mission:

CFIDS is a serious and complex illness that affects over one million U.S. adults, more than multiple sclerosis (MS), AIDS or lung cancer. The illness is characterized by incapacitating fatigue, problems with information processing and memory, flu-like symptoms, pain in the joints and muscles, dizziness, nausea, sleep disorders, severe headache and numerous other symptoms. Our mission: For CFS to be widely understood, diagnosable, curable and preventable.

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.

2014 Top-Rated Nonprofit
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704-365-2343
http://www.cfids.org

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Reviews for The Cfids Association Of America, Inc.

Rating: 5 stars  

2 people found this review helpful

We are family members of someone with ME/CFS and are impressed with the Research Without Walls program that we had the opportunity to learn about recently in Washington DC. The effort and expertise of those involved are moving toward answers for this mystifying and debilitating condition.

 
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Review from Guidestar
Rating: 5 stars  

1 person found this review helpful

Chronic Fatigue is a serious problem with many people today. The research that SMCI is doing is helping people have normal lives again. The more information we have the faster this can be solved. My family has directly benefited from the assistance and will support SMCI.

 
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Rating: 5 stars  

2 people found this review helpful

As a psychologist, I have experienced clinical research funding and clinical trials with patients. What impresses me about the research approach of the Solve ME/CFS Initiative is the wise use of contributions and funding sources in cost effective ways to get the most value and use in developing research projects from the funds available to them. To re-purpose the use of existing drugs that might be helpful in treating those with CFS has been a fairly novel, cost savings and common sense approach in the search for cures for ME/CFS. This is an important model for drug testing that can hopefully pinpoint more accurately and quickly drugs of potential benefit for symptom relief to a suffering population that is surely in need of symptom relief and return to normal living. Witnessing the struggles of families with a loved one stricken with ME/CFS demonstrates the courage, fortitude, and quiet perseverance of those who face each day with great effort and determination. Because symptoms are often invisible to the casual observer, the debilitating effects of this ailment are often overlooked or unfairly minimized. It is my belief that the ME/CFS Initiative offers real hope through effective research to a population much in need of relief. I am proud to give financial support the efforts of this organization.

 
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Review from Guidestar
Rating: 5 stars  

For more than 25 years we have witnessed the daughter of friends cope with the debilitating effects of CFS. Distressingly, a cure seems beyond the horizon. Lacking significant support from the government or pharma, research is neither wide-spread nor adequately funded. Therefore, it falls to the hands of those outside the system to stimulate the research effort. Through our friends we have become familiar with the Solve ME/CFS Initiative and its efforts to attract and sponsor scientists interested in finding a cure. We’ve been impressed with the well thought out plans of the organization and its efficacy in translating them into action. We’ve become supporters of SCMI. It clearly deserves the support of others, as well.

 
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Review from Guidestar
Rating: 5 stars  

I learned about SCMI (formerly the CFIDS Assoc. of America) in 2011 when I got back in touch with a good friend from college and learned that she was (and is now again) a member of its board of directors and that her daughter has suffered from ME/CFI for many years. This personal connection led me to take a closer look at this disease and to appreciate how debilitating it can be and how much needs to be done to be able to treat it effectively. I am very impressed by the cost-effective and focused strategy that SCMI is taking to fund research to find a cure for ME/CFI and for this reason I have been making significant donations to them over the past four years.

 
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Review from Guidestar
Rating: 5 stars  

This is an excellent, well-run organization, with fine leadership. Its mission to support much needed research for this misunderstood condition deserves support.

 
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Rating: 5 stars  

1 person found this review helpful

Shortly after I was diagnosed with ME/CFS I discovered this organization and frankly it saved my sanity. I had no idea what the illness was and neither my doctor not I knew how to treat it. The organization gave me information and support and the knowledge I was not alone . Just the stories of others and their experiences with the illness gave me confidence. It also serves as a repository for research information but does an excellent job of screening studies for quality and is careful not to
jump on the latest bandwagon.
Over the years the organization has varied its focus , at the urging of patients, from expanding public awareness of the illness to serving as a catalyst for research. Its efforts have enabled researchers to collect pilot data that could then serve as the basis of successful large scale grant requests. I am now a simple member and donor to the organization but have previously served on the Board and used my research skills to review applications for pilot study funds. I have watched as the organization created a Biobank data set of persons diagnosed with CFS and controls to enable researchers to have access to a credible pool of persons willing to participate in research. This dramatically shortens the time needed for studies and ensures quality in the population studied. In return the Association retains access to the research results. It is one of the most creative research structures I have ever seen and promises to dramatically speed up progress. I know my funds donated are well spent and can see the results in Webinars held by the researchers during the year to summarize their findings.

 
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Review from Guidestar
Rating: 5 stars  

So impressed by the work and accomplishments of this organization. It is a smart nonprofit, doing great and much-needed work! Highly recommended.

 
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Rating: 5 stars  

1 person found this review helpful

I have followed the work over many years of close friends' fight to help their daughter. How they have turned over every stone to find a way forward and increase the prospect of effective treatment. The focus of SMCI's is to provide research support that better can help to understand the illness and its possible cure by instituting a BioBank that is "research ready", supplying grants to researchers, and connecting researchers in an "institute without walls". I am most impressed by the persistence, profound knowledge and drive of the people involved in the SMCI.

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Rating: 5 stars  

1 person found this review helpful

I became ill with ME/CFS in 1986 when SMCI (formerly CFIDS) was nearly my only source of information about the disease, treatment and my experience as a patient. Their educational materials and communications helped me understand what was happening to me and gave me a way to explain it to my family, friends and doctors through many tough and baffling years. SCMI was, and remains, a primary source of hope and encouragement in my life and a means to connect and share my experience with other patients, now friends.

I regularly attend the research roundtables and webinars and I am thrilled and excited with the direction of the organization, particularly since Suzanne Vernon came on board. Under her brilliant leadership SMCI will continue to advance the science and I believe ultimately fulfill its mission to make ME/CFS understandable, diagnosable and treatable. I recently met Carol Head and I have a lot of confidence in her ability, along with a strong board of directors led by Vicki Boies, to move the organization forward in support of their new research agenda. The seed money they have provided to new researchers has already had a huge impact both in terms of new discoveries and its ability to generate additional government and private dollars. The biobank will attract new researchers and allow them to share knowledge and discoveries in ways that are unprecedented in this field.

Unfortunately, the ME/CFS community is a fractured one that has not yet found a singular, coherent agenda. Because we don't always agree, and sometimes voice our controversy in non-productive ways, SCMI has over the years sometimes found itself in the eye of the storm. I am deeply appreciative that SCMI (then under Kim McCleary's leadership) continued to remain a strong and unwavering advocate for people with ME/CFS in spite of, at times, some pretty tough criticism.

For all of these reasons, I feel extremely grateful to this organization. I know that every dollar I donate is an investment in the future of the millions of people worldwide who suffer the losses that come with this disease. I only wish that I could give more.

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

Give them enough resources to do even more!

Was your donation impactful?

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How likely is it that you would recommend that a friend donate to this group?

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How likely are you to donate to this group again?

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When was your last experience with this nonprofit?

2014

 
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