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Kenneth F.

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PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
November 1, 2012

This organization started as a one-woman show in Florida with an impossible mission. With a lot of hard work, the organization has grown from a local, statewide organization into a national presence. Although the organization represents and speaks on the behalf of other illnesses, P.A.N.D.O.R.A's focus on patient advocacy for chronic fatigue syndrome patients is unique. There is currently no other organization that advocates for the million or more patients with this illness at the national level. Advocacy for patients with this illness at the national level is of paramount importance as the federal government and the medical profession have ignored these patients and challenged the patients' belief that their belief is "real." Without P.A.N.D.OR.A. advocacy at the national level, there is little if any hope for these patients leaving them to suffer untreated or kill themselves.

More feedback

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

MY ROLE:
Board Member

NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC. (NJCFSA)
October 2, 2012

NJCFSA has been and remains one of the standard bearers of Chronic Fatigue Syndrome assistance, research and education. From providing hotlines for desperate patients and patients, to providing yearly conferences to update the skills of the clinicians who treat CFS patients, NJCFSA has been there and here for nearly twenty-five years. Ours was the first patient advocacy group to empanel a group of experts to write a diagnosis and treatment for CFS, lobbied the state legislature for the funding of it, and produced a manual that became the bible of CFS patients and clinicians for mare than a decade. Translated into several foreign languages, it has propelled the understanding of this syndrome to the far corners of the earth and is only now being replaced by the IACFS/ME Primer. The NJCFSA continues to meet the needs of CFS patients within New Jersey and provides support and guidance for programs throughout the United States as patients and their organizations reach the realization that we will wait an intolerably long time if we rely on the government to assist our community, but rather we must control our own destiny but seizing and creating the opportunities as NJCFSA has done and continues to do.

More feedback

Will you volunteer or donate to this organization beyond what is required of board members?

Likely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

MY ROLE:
Board Member