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Nonprofit Overview

Causes: Arts & Culture, Health, Printing & Publishing, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines

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.

Community Stories

80 Stories from Volunteers, Donors & Supporters

4

Volunteer

Rating: 5

I've been working with this organization for decades, and have nothing but positive things to say about it. They are ethical, superbly informed, and a marvelous resource for patients. They've been fighting for research, understanding and recognition for this disease, and the decisions they have made are brilliant.

Review from Guidestar

4

Client Served

Rating: 5

There is no cure for ME/CFS and no treatment available within the medical system, a fact that can make the future seem bleak at times. However, I am able to have hope for my future because of the knowledge that the people at the CFIDS Association (CAA) are working tirelessly to solve ME/CFS. Because of the CAA I have hope that there will one day be a cure for ME/CFS. As well, I receive frequent updates on current research funded by the CAA, reminding me that that work is being done each day to help me. This gives me validation and support in my struggle. The CAA also compiles knowledge and treatment information from top experts around the world, and this information has prompted me to make changes that have improved my quality of life.

Review from Guidestar

5

Donor

Rating: 5

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.

Review from Guidestar

2

General Member of the Public

Rating: 5

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.

2

Donor

Rating: 5

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.

Review from Guidestar

3

Client Served

Rating: 5

I am very excited about the research they are startimg. The best part is they aren't locked into any one theory on why this is happening.

Can't wait to see the results

Review from Guidestar

3 Joe_60

Client Served

Rating: 5

I have been a patient advocate in this area since 2009, and have already seen many groups and individuals rise and fall in a brutal field for a brutal illness, Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome. SolveCFS remains through all the turmoil of scientific disagreement, bureaucratic malfeasance, clinical disdain, scandal and scientific retraction. They have a demonstrable record not only of survival, but of parlaying small research studies into definitive findings and larger follow-on studies, maximizing limited research budgets. They make the effort to show up and meet patients at most related Federal and non-profit conferences on the illness. I only wish more outside researchers would realize the contribution they are making.

Review from Guidestar

3

Donor

Rating: 5

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.

Review from Guidestar

3

Board Member

Rating: 5

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.

3

Client Served

Rating: 5

I could write a soliloquy for this review...

Simply put.. They give me hope.


-DJ

Review from Guidestar