Celiac Sprue Association USA, Inc.

Rating: 5 stars   7 reviews

Issues: Cancer

Location: PO Box 31700 Omaha NE 68131 USA

Mission: CSA is a member-based, non-profit organization dedicated to enchaning the lifestyle of those with celiac disease by developing and disseminating educational materials and gluten-free diet information world wide and to support and publicize related research; to serve as a vehicle for mutual support opportunities; and to work for improved food labeling practices for ingredients that affect those maintaining a gluten-free food plan.

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Community Reviews

Rating: 5 stars  

I love their newsletter and great website. All of thier work is very professional and for the members and individuals with celiac disease. They are truly for the clients and work for the good of individuals with celiac disease

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

I do not have celiac disease, but my friends do and I have seen, first hand the impact of this volunteer based organization. I have been in the CSA office when the toll free phone has been ringing off the wall with people needing help, asking questions about their disease. The wonderful, caring staff work very hard to make everyone that contacts them feel important. I have also worked to help with the educational offerings that CSA distributes. They have a great collection of printed material and an extremly popular website. I know many use and trust the CSA Product Listing. Truly, CSA members live the CSA motto-"Celiacs Helping Celiacs!"

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

seeing my friends helped and educated by CSA in regard with their celiac disease.

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

make them more aggresive in promoting themselves and getting the word out about the many CSA programs.

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Rating: 5 stars  

In 2005 I sought help from CSA because no other treatment could be found for my various painful and worsening symptoms. Through CSA I finally found answers and relief from my symptoms CSA's outreach tells medical and lay-persons alike that gluten in wheat, rye, barley, cross-contaminated oats and all the derivites therefrom, is what sickens. Their research, compilation of data and constant updates on treatment strategies truly saves lives and reduces suffering. It takes a great deal of work to explain elusive celiac disease, to dispel the misconceptions of what CD is and what causes it. But, through CSA's efforts our nation becomes healthier one person at a time. Funding for CSA to continue research and awareness is especially crucial!

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

Gaining knowledge on how to manage my own CD with the gluten-free diet. Once my health was restored, I have become a more confident person . It has emboldened me to, encouraged me to again dream and therefore strive to achieve, whereas before, when I was sick I had given up thinking I would ever enjoy life.

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

See that regular, dependable funding is in place so CSA will continue," Celiacs Helping Celiacs". They sure have helped me!

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Rating: 5 stars  

CSA has done a tremendous job helping the public understand Celiac Disease. This non-profit group has a wonderful website full of a plethora of helpful information for both those who are newly diagnosed and those who have had CD for a while and need guidance.
I love their motto! Celiacs helping Celiacs.

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

This group has helped me learn about Celiac Disease and the other auto-immune disorders associated with it. I have experienced better health as a result. Because they have helped me, I intend to give back by serving on our local chapter's board.

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

Give them more funding for outreaches. They are a non-profit group and like most non-profits they could benefit from more funding to carry out their mission.

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Rating: 5 stars  

I was diagnosed with celiac disease in the early 1940s. I discovered the Celiac Sprue Association in the 1980s and joined immediately. The organization has been a tremendous help in my disease education as well as member support. I joined the board in the early 1990s and have never worked with a group of more dedicated people. The organizations primary goal is to help create a better life for those with celiac disease and related illnesses and sensitivities. The organization has over 130 chapters, 140 Resource units and approximately 7-8.000 members world wide. It is the largest member based celiac organization in the United States.

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

Definitely, see above.

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

Work towards increasing the organizations fund raising ability to further help celiacs everywhere.

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?

by accident

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

Assuring truly gluten-free products for all celiacs in the U.S.

What is its top priority in the long run?

To be the best celiac support organization for our members anywhere in the world.

When was your last experience with this nonprofit?

2010

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Rating: 5 stars  

5 people found this review helpful

This organization for individuals with celiac disease and dermatitis herpetiformis is really a dedicated and caring group to work with and at a very professional level. They have a motto of "Celiacs Helping Celiacs" and they really do just that. I have learned much from their website and the many free materials they distribute. They have a wonderful newsletter and I would reccomend buying their CSA Product Listing. It is the bible for people with celiac disease. Thank you, thank you, thank you CSA.

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

They answer every question and have a great toll free number.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-6-01

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Rating: 5 stars  

5 people found this review helpful

I found out about this organization in the 1980s. Having been originally diagnosed in the 1940s and again in the 1960s, I was looking for help. CSA was able to help me with my diet and by my attending their national conferences and local support groups, I learned even more about my disease. This experience enabled me to better communicate with my physician and take control of my illness.

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

see review.

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

enroll more volunteers.

What I've enjoyed the most about my experience with this nonprofit is...

Meeting other celiacs from across the country.

The kinds of staff and volunteers that I met were...

Super!

If this organization had 10 million bucks, it could...

Do wonders and help end this disease.

Ways to make it better...

couldn't have been better.

In my opinion, the biggest challenges facing this organization are...

Membership and fund-raising

One thing I'd also say is that...

When was your last experience with this nonprofit?

2010-8-01

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