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New Jersey Chronic Fatigue Syndrome Association Inc. (NJCFSA)

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Nonprofit Overview

Causes: Health, Specifically Named Diseases Research

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

Community Stories

27 Stories from Volunteers, Donors & Supporters

Professional with expertise in this field

Rating: 5

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

Previous Stories

General Member of the Public

Rating: 5

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.

frenchtulip

General Member of the Public

Rating: 5

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!

Previous Stories

General Member of the Public

Rating: 5

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!

Gabby K.

Volunteer

Rating: 5

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!

Anne80

General Member of the Public

Rating: 5

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.

1 leelaplay

General Member of the Public

Rating: 5

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.

1

Professional with expertise in this field

Rating: 5

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.

General Member of the Public

Rating: 5

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.

1 Eric18

General Member of the Public

Rating: 5

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.

Previous Stories
1

Donor

Rating: 5

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

1 Helen A.

General Member of the Public

Rating: 5

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.

Chang

Volunteer

Rating: 5

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.

Previous Stories
1

Board Member

Rating: 5

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.

1

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

My daughter has had CFS for about 20 yrs. It has seriously affected ger life adversely and has severly limited her ability to do normal activities. NJCFSA is a great organization that works very hard to help people with CFS and to raise money to find a cure for CFS, despite many of the people running it having this terrible illness that makes it very hard to do extra work. They also help organizing support groups for people with this illness. This is an excellent group to support!

1

Client Served

Rating: 5

NJCFSA is a great organization that works very hard to help people with CFS and to raise money to find a cure for CFS, despite many of the people running it having this terrible illness that makes it very hard to do extra work. They also help organizing support groups for people with this illness. This is an excellent group to support!

1 Garrett W.

Client Served

Rating: 5

This is a great organization. They hold anual workshops which bring patients and experts together to socialize and learn about new treatments. They have an annual scholarship fund which helps a college student and also helps spread knowledge of chronic fatigue syndrome. It is run all by volunteers and they make a huge difference in peoples lives with the chronic illness ME/CFS. I look foreward every year in the fall to go to the conference.

1

Volunteer

Rating: 5

The NJCFSA is an organization dedicated to helping those suffering from the debilitating effects of Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME). They run support groups; publish an informational Journal; have a lending library for books, audios and videos on CFS and chronic diseases; disseminate information to doctors, health care providers, and patients; put on an annual health conference of medical experts in the field; support ME/CFS research; provide college and medical school scholarships; exhibit at health fairs; run a toll-free HelpLine; participate in advocacy and awareness projects; plus many, many other activities – ALL of which is done solely by volunteers, including a completely volunteer Board of Directors! How they accomplish so much is mind-boggling!! Go to www.njcfsa.org for more information!

1

Client Served

Rating: 4

Received wonderful support and information from this organization. This organization is always truly willing to go out of its way to try to help people and families of someone with CFS. I am so thankful that when I was first diagnosed with CFS that I was able to find this organization and receive invaluable support and info on doctors, how to apply for disability benefits, etc. This organization brings in people from the outside such as Social Security administrators, health professionals, social workers, etc. so that you can obtain information and support. This orgainization is invaluable for someone with CFS!!!

1

Volunteer

Rating: 5

Developed CFS and nobody could help or even understand. NJCFSA had support meetings, literature, phone contacts, doctor referrals and more. It put things in perspective for me and made me feel confident about dealing with this tricky illness. I found good information, friends, hope and even a wife. I am very grateful to NJCFSA being there when I was in need.

1 Kenneth F.

Board Member

Rating: 5

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.

1

Client Served

Rating: 5

Through NJCFSA, I was able to find a local support group for my husband, who has CFS, and me. The people, resources, and overall support have made a significant impact for my husband, me, and our marriage.

1 Jane38

Client Served

Rating: 5

NJCFSA is very helpful in learning about the illness. The Annual Conference is a great way to learn about treatments; research findings; and share your thoughts and feelings with others. You are not alone. I attended 2010's Annual Conference. The Vermont CFSA's Film was shown. It was about people who have Chronic Fatigue and how they have been dealing with the illness. I purchased the DVD of the film because it was so meaningful to me. It was a long day for me, but it was well worth the trip. I miss my local Support Group very much. Betty was a great support group leader. Thank you Betty.