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frenchtulip

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6 reviews

Review for Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc, Traverse City, MI, USA

Rating: 5 stars  

PANDORA ORG does an outstanding job for patients with NEID's and their families! They work to educate patients, their families, and physicians about NEID's. They engage in advocacy, support research, and are committed to improving the qualify of life for patients. PANDORA is an all-volunteer organization with compassionate and extremely committed leadership!

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?

2014

Role:  General Member of the Public

Review for New Jersey Chronic Fatigue Syndrome Association INC. (Njcfsa), Florham Park, NJ, USA

Rating: 5 stars  

The NJCFSA provides tremendous support to patients with ME/CFS and their families by providing reliable information through support groups, medical conferences, a journal, a lending library, and even a helpline. They support research, advocate for ME/CFS patients, and provide a scholarship annually to a student with ME/CFS. They also provide a scholarship annually to a medical student interested in the illness. The leaders are extremely professional and compassionate! The organization has a fine reputation internationally for helping those affected by ME/CFS and their families!

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?

2014

Role:  General Member of the Public

Review for New Jersey Chronic Fatigue Syndrome Association INC. (Njcfsa), Florham Park, NJ, USA

Rating: 5 stars  

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!

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

Role:  General Member of the Public

Review for The Cfids Association Of America, Inc., Charlotte, NC, USA

Rating: 5 stars  

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!

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

Role:  Client Served

Review for Whittemore Peterson Institute, Reno, NV, USA

Rating: 5 stars  

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.

Role:  Client Served & -.

Review for Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc, Traverse City, MI, USA

Rating: 5 stars  

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.!

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