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CFIDS patient

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PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
November 12, 2012

PANDORA works with neuroendocrine immune disorders, including ME/CFS, Fibromyalgia, Multiple Chemical Sensitivities, Chronic Lyme Disease, and Gulf War Illnesses. They provide education for patients and for physicians. They advocate for government services for patients and increased government funding for medical research. An innovative program is the training of patients to be effective advocates for themselves. Local fund-raisers are held to fund patient services and medical research. This is an organization which has inspired hope in me and in countless other patients in this country and beyond!

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When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served

NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC. (NJCFSA)
October 17, 2012

The NJCFSA is 501 (c)(3) charity offering 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!

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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?

2012

MY ROLE:
General Member of the Public

The CFIDS Association of America, Inc.
June 10, 2011

For over two decades, The CFIDS Association of America has led the way in public policy, research, and education to advance the cause of over one million Americans suffering with CFIDS (also know as ME/CFS). They have worked diligently to educate the public, the health care community, legislators and other public officials about the debilitating nature of this illness and urged increased congressional funding for research. In the late 1990’s, this nonprofit worked closely with the Social Security Administration, which resulted in a ruling making it easier for disabled CFIDS patients to get federal disability. During that same time period, they also played a key role in uncovering the diversion of CFIDS funds to other health issues at the Centers for Disease Control. A federal investigation resulted in a restoration of $12.9 million to CFIDS research. The CFIDS Association has funded millions of dollars of research. Some of their research projects have been picked up by the National Institutes of Health and fully funded. The organization’s current focus is research. They are working to find cause(s), diagnostic biomarkers, treatments, and hopefully a cure. Promising studies are selected based on strict scientific criteria. Their research efforts have an impact for the 17 million CFIDS patients around the world. This organization has an extremely dedicated staff and is respected by researchers and clinicians internationally. The CFIDS Association has been a lifeline for thousands of us who are affected by this illness. I have been a member for the past 17 years and am extremely grateful for all they have done to help the CFIDS community!

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

I have been a member of this organization for 17 years.

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

It would be great if this organization had more donations, because they use the money very carefully.

MY ROLE:
Client Served & I am a patient advocate.