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NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC. (NJCFSA)
October 23, 2013

The NJCFSA offers compassionate support to patients suffering with chronic fatigue syndrome (ME/CFS) and their families. It makes available reliable information about ME/CFS through a variety of venues, including support groups, a journal, a lending library, medical conferences, and a helpline. The organization promotes research into ME/CFS, advocates for patients, and gives scholarships annually to a high school student with ME/CFS and a medical student interested in ME/CFS. The organization has outstanding leadership and is recognized internationally for the help it provides to the ME/CFS community. This is an excellent nonprofit making a huge difference in the lives of those with this debilitating disease and their loved ones!

More feedback

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

MY ROLE:
General Member of the Public

The CFIDS Association of America, Inc.
November 11, 2012

For nearly twenty years, The CFIDS Association has provided me with invaluable information on ME/CFS and the latest research. They have engaged in advocacy which has greatly advanced our cause. Recently, they established an innovative "Research Institute Without Walls" to facilitate a scientific understanding of the illness. This is a superb nonprofit with a highly professional staff. I am enormously grateful for all they have done to help me and the countless other patients in this country and around the world!

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served

Whittemore Peterson Institute
February 3, 2011

Although the WPI has been in existence only a few years, it has already found a link between ME/CFS and the third human retrovirus, XMRV. A high percentage of persons with ME/CFS tested positive for XMRV. This research was done in collaboration with the Cleveland Clinic and the National Cancer Institute. This has created much interest within the scientific community, with other researchers eager to study XMRV. Harvard, Cornell, NIH, and the FDA have done research confirming the findings of the WPI and collaborators. The WPI's findings have focused much needed attention on ME/CFS, a poorly understood neurological illness affecting one million Americans.

The Great!

I've personally experienced the results of this organization in...

The finding has given hope to millions around the world suffering with ME/CFS (including me) that we may one day better understand the illness and be able to find effective treatments.

Ways to make it better...

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

The government should fund the WPI!

MY ROLE:
Client Served & -.

Review from Guidestar
PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
February 3, 2011

P.A.N.D.O.R.A. serves an estimated 20 million Americans affected by Neuroendocrine Immune illnesses. These illnesses include ME/CFS, Fibromyalgia, Multiple Chemical Sensitivites, Gulf War Syndrome, and persistent Lyme disease. The organization serves as an advocate for those suffering from these illnesses by helping shape public policy and supporting education and research. They are currently working toward the establishment of a clinical and research facility in New Jersey, the NEI Center. Their ability to bring people from different groups together has been impressive. Although they are a small organization, they were successful in getting other groups to vote for them in the recent Community Chase Giving Contest and won $20,000. The prize winnings will go largely toward the NEI Center. Their motto is: "ONE VOICE, ONE COMMUNITY, ONE CAUSE." Their dedication, enthusiasm, and "I Can!" mentality inspires everyone and gives hope that we will find ways to alleviate the suffering of those with NEI illnesses.!

The Great!

I've personally experienced the results of this organization in...

P.A.N.D.O.R.A. supports awareness-raising projects. Recently they helped raise money to buy an ad in the Washington Post about ME/CFS. There was also a blurb from the ad that appeared on a huge sign in Times Square in New York City. These efforts help government officials and the public understand the devastating nature of NEID's and the need for increased funding.

Ways to make it better...

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

If they had more funding, they could do even more.

MY ROLE:
Client Served & All I do is let them know if I spot a fund-raising opportunity.

Review from Guidestar