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25 Reviews
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October 2, 2012
1 person found this review helpful

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October 2, 2012
1 person found this review helpful

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.

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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

April 6, 2012
1 person found this review helpful

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April 6, 2012
1 person found this review helpful

Although I do not have CFS, My wife has been afflicted with this puzzling and debilitating disease for many years. I have been a volunteer at the yearly conferences as a videographer. This duty allows me to see and hear the conference materials presented by Doctors and other medical professionals many times during the editing and DVD production process. This activity has given me revealing insite to becoming a critic into a believer that this disease is real. I am a new board member and hope that I can convey my discoveries to those that can supply needed cash and support so that this disease can be eliminated.

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

October 24, 2012

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1 previous review
August 18, 2011

NJCFSA gave me information when we needed it most, which was when we needed to deal with the school system concerning our daughter's inability to attend school. More important was the hope I gained w... more

October 24, 2012

The New Jersey Chronic Fatigue Syndrome Association is a very worthwhile organization that offers information to patients, as well as advocating for acknowledgement and treatment of this often ignored illness. When our daughter was diagnosed, they provided our family with information for the school system, as well as recommendations for competent physicians. Their conferences are always excellent, with wonderful speakers....indeed, we met our daughter's current physician at one of these conferences. This has made a tremendous difference in our daughter's quality of life.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

August 18, 2011
1 person found this review helpful

NJCFSA gave me information when we needed it most, which was when we needed to deal with the school system concerning our daughter's inability to attend school. More important was the hope I gained when I met all the people dedicated to getting CFS recognized and treated. Lastly, the group presents an extremely informative conference on the latest research on CFS on a yearly basis. As a result of one of the conferences, I was able to find the physician who is currently treating my daughter.

The Great!

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

my ability to comprehend the research and treatment of CFS. I've also benefitted from the conferences the group organizes yearly. The quality and knowledge of the speakers is impressive--- always cutting-edge.

Ways to make it better...

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

hope that they could find more volunteers as well as funds to continue to run the organization.

December 14, 2010
1 person found this review helpful

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December 14, 2010
1 person found this review helpful

The New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA) is an all volunteer organization devoted to ME/CFS. It provides information to families, friends, physicians, school districts and others involved with ME/CFS patients. It conducts annual physician/patient conferences featuring world class experts in the ME/CFS. It also provides a website (www.njcfsa.org,) a FaceBook page (New Jersey Chronic Fatigue Syndrome Association, Inc. - NJCFSA), a Helpline and its members receive a twice yearly Journal. The all volunteer board is composed of patients and family members of patients - most being patients who use their very limited energy to help others. NJCFSA interacts with other leading ME/CFS and NEI organizations. While based in New Jersey this organization in internationally recognized for their work. Thye rely on donations to continue their efforts.

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The Great!

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

I have had the privilege of helping people for several years. It is extremely gratifying to have some one say you helped them. Sometimes it is a parent whi needed help with a school or a patient who needed advice. Jsut when you think you have no more energy to do the work, a perosn expresses that you helped wehn they desperately needed help. That is what keeps us going.

Ways to make it better...

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

The organization is great! What we need is funds to do our work, and more people to help do it. We need to endow both our High School and medical student scholarships as well as increase the money in our research fund. Day-to-day expenses have risen while donations are down. Major fund raisers are difficult given that we cover the whole state of NJ (and beyond) and we are also ill and have limited energy.

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

How did you learn about this organization?

I learned about it when I joined the local support group many years ago.

What is this organization's top short-term priority?

There are multiple short-term priorities. Helping patients receive good care; educating physicians, schools and others about ME/CFS; and endowing the two scholarships are among top priorities.

What is its top priority in the long run?

The top priority - in the long run - is having ME/CSF acknowledged as a valid disease by the medical community and the world.

When was your last experience with this nonprofit?

2010

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