NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC. (NJCFSA)

Rating: 4.96 stars   27 reviews

Issues: Health

Location: PO Box 477 Florham Park NJ 07932 USA

Mission: The New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA) The mission is to support patients, disseminate reliable information, and promote research. It sponsors a wide range of activities including: support groups, Journal, physician/patient conferences, Helpline, healthcare professional and attorney referrals, website (www.njcfsa.org), lending library, medical education efforts, research grants, high school and medical school scholarships,Child/teen Emergency Fund and exhibiting at conferences (such as, NJ Education Association, NJ State Nurses Association, and the American Academy of Pediatrics/NJ.)
Programs: HS graduate Schloarship Medical Student Scholarship Annual Physician/Patient Conference Helpline Support Groups

2012 Top-Rated Nonprofit
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Community Reviews

Role: Professional with expertise in this field
Rating: 5 stars  

They take on the challenge of making people aware of very devastating illnesses and advocating on their behalf.

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1 previous review
Rating: 5 stars  

The NJCFSA (http://www.njcfsa.org/) is a wonderful organization helping patients and families deal with ME/CFS - a very disabling illness. Just check their site to see the tremendous work they do.

Will you volunteer or donate to this organization?

Likely

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

A lot

When was your last experience with this nonprofit?

2013

Was this review helpful? 
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!

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

None

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

Was this review helpful? 
1 previous review
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

Was this review helpful? 
Rating: 5 stars  

I have personally attended a couple of seminars that the New Jersey Chronic Fatigue Syndrome Association Inc. (NJCFSA) hosted. They presented experts in the field of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) who gave very informative and interesting aspects of the disease.
These sessions were conducted very professionally and I was glad to have the opportunity to attend and gain insight. Since I live In New York, it was an easy drive for me and very worthwhile.

Thank you NJCFSA for everything that you do for us patients!

Would you volunteer for this group again?

Likely

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?

Likely

When was your last experience with this nonprofit?

2009

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

The NJCFSA helps inform the public and the professional world about a devastating disease that is often trivialized. "Chronic Fatigue Syndrome" sounds benign ("yeah, I get tired, too") yet the reality is that a majority of sufferers are housebound and the sickest are unable to move. The majority of medical professionals know little or nothing of this illness and much of what they think they know is actually inaccurate. By providing solidly researched yet accessible information to professionals, they break down walls of stigma. By providing that information to the public, they empower very sick patients with practical knowledge. The benefit of the NJCFSA goes far beyond the residents of New Jersey, positively impacting people across the globe.

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

get them much more funding. This is a great organization. I wish I were in a position to volunteer (too sick) or donate (too many medical bills) -- if I could, I would.

Will you volunteer or donate to this organization?

No

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

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

NJCFSA is one of the outstanding ME/CFS groups. On top of the outstanding services they provide to their area, they also reach the international community, for eg a wallet card on ME/CFS to use at ER. This helped me work with my anaesthesiologists to come up with an ME protocol that worked for me. Previous surgeries had left me no longer able to care for myself for months.

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

Provide them with more funds so they could increase their services.

Will you volunteer or donate to this organization?

Unsure

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

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

Pat LaRosa and the NJCFSA are one of the best organizations around. They bring education to schools and school nurses to educate them about pediatric ME/CFS. Our organization, PANDORA Org, has worked closely with NJCFSA on a 2 year project asking FDA for a stakeholder meeting for drug development. We were successful in landing the first Patient Focused meeting in spring of 2013. We continue to push for FDA treatments for ME/CFS.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

While there are many organizations that form a tapestry in the CFIDS community, the NJCFSA stands out in there commitment to disseminate information throughout the CFIDS community here in lovely New Jersey. They were there when I needed to find a physician for my young daughter when she developed CFIDS. They were there when I needed critical information through their conferences and now I like to return the favor by letting them know how appreciative I am for their dedicated work.

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

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

The NJCFSA have been working hard to serve an underserved patient population for many years. They have innovative ideas such as their scholarship for medical students. I think they have good connections to politicians, which is very valuable.

Will you volunteer or donate to this organization?

Unsure

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

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

Even though I live in Europe, I know about the NJCFSA because of the excellent work they're doing.

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Likely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

I live in Canada, but have found the information provided by New Jersey Chronic Fatigue Syndrome Association on their website very useful. I discovered this link after downloading some information for my physician from their site. I am appreciative to them for their help, and would like to thank them. I suspect they have no idea exactly how far reaching their effect is.

Will you volunteer or donate to this organization?

Unsure

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

A lot

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

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

Was this review helpful? 
1 previous review
Rating: 5 stars  

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.

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.

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.

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