National Foundation for Celiac Awareness
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July 6, 2011
NCFA has been a player in the Celiac community for years, and yet there's a lot of questions in terms of where the money raised goes for years.
I used to donate to NCFA, now I don't. I'm not comfortable any longer with the organization.
So please, answer the questions. How much is raised? How much goes to admin? Where does the $ from the events go? the amounts raised from the gala and amts spent on webinars and handouts just don't add up.
and for goodness sake, why start another GF cert program when there are already 2 in place?
I would love to feel comfortable supporting NCFA, but I can't until I have further info.
The Great!
I've personally experienced the results of this organization in...
I've donated...that's about it
Ways to make it better...
If I had to make changes to this organization, I would...
suggest TRANSPARENCY with money. That way, if it's being used well, there are no questions, and if it's not, people are aware so they can make their decisions appropriately.
June 29, 2011
My daughter was diagnosed in February 2011. NFCA has been a great resource for our entire family. I love all the information available on their website, it's really the place to find any answer to questions about celiac disease.
The Great!
I've personally experienced the results of this organization in...
Understanding celiac disease the effects short term and long term. How to care for a child with Celiac's.
Ways to make it better...
If I had to make changes to this organization, I would...
none
1 person found this review helpful
June 29, 2011
1 person found this review helpful
I was diagnosed with Celiac Disease in March 2011 and the NFCA has been my sole location for information to help me cope. I've had contact with the people who run GREAT Kitchen's and they have been such a GREAT help in getting more restaurants on board in my area. The website is so easy to navigate and provides just what you are looking for. The events that the NFCA hosts have been wonderful as well as the information they provide to the public about awareness in getting tested regardless of symptoms. To think that I live in the very same town where the founder is from makes this organization that much more special for me. Keep up the GREAT work!
The Great!
I've personally experienced the results of this organization in...
I recently had a gluten attack due to a chain restaurant promoting that they have a gluten free menu however they are not GREAT Kitchen certified. I had then been contacted by the NFCA to help make this chain better for us with celiac.
Ways to make it better...
If I had to make changes to this organization, I would...
Not change anything other than helping to advocate with them.
More feedback...
How would you describe the help you got from this organization?
A lot
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
How did you find this group?
I was given brochures from my doctor when I was diagnosed.
What, if any, change in your life has this group encouraged?
Eating out
When was your last experience with this nonprofit?
2011
June 29, 2011
NFCA has been a wonderful resource for me even when I was on the path to being diagnosed with Celiac. The strides they are making in providing new and updated information to myself, and others is invaluable. I am constantly referring others I come across to this site as the "go-to" place for any information on the disease itself and going gluten-free.
The Great!
I've personally experienced the results of this organization in...
discovering foods with hidden glutens, finding restaurants with gluten free menus, and finding up-to-date information I could take to my Dr who had an extremely old-school view on Celiac disease.
Ways to make it better...
If I had to make changes to this organization, I would...
the only thing I would change is to be more vocal on the Celiac awareness months/days. I receive e-mails, but I see no events say on the News or in Newspapers (at least in BC and AB).
June 29, 2011
My daughter was diagnosed almost 2 years ago with celiac. At the beginning of our journey we had such a mixed bag of emotions... life without her basic core of foods, interpreting labels, at least it is a chronic disease that is controlled by food and not some pharmacological drug that could have long term side effects, and on and on.
Then the reality of cross contamination began for us. Time and again she would become ill from cross contaminated foods or by products that claimed to be gluten free but did not meet our needs. FDA involvement is so much more than a want, it is a desperate need.
This is where NFCA comes in. Our faith and trust in NFCA is 100%. If they back a product you know it is safe. They attend our support group meetings and education seminars. They open communication channels with restaurants so they understand the impact of cross contamination. Their push to get the FDA to establish regulations is nonstop.
My daughter's future gets better and better because of the dedication and continuous work of NFCA.
Supporting NFCA means ensuring the health and wellbeing of celiacs and gluten intolerants throughout the U.S..
The Great!
I've personally experienced the results of this organization in...
Every aspect of our daily lives.
Ways to make it better...
If I had to make changes to this organization, I would...
Find methods for volunteers to do more grassroots type of campaigns in their neighborhoods.
June 29, 2011
I have been involved with the NFCA for almost 7 years now. Under the leadership of Alice Bast, the NFCA has made an enormous impact on the lives of those living with celiac disease. The NFCA has promoted proper diagnosis, promoted greater availability of GF food and promoted awareness all the way from the NIH to the local grocery store. I truly feel that my twin daughters' quality of life are better thanks to the NFCA.
The Great!
I've personally experienced the results of this organization in...
Seeing the organizationat work first hand and seeing that it has a very personal and specific mission to improve the lives of people with celiac disease.
Ways to make it better...
If I had to make changes to this organization, I would...
none
More feedback...
Would you volunteer for this group again?
Definitely
June 29, 2011
When I couldn't find out what was wrong I was told to follow them on FB. Their advice and knowledge is above and beyind what I expected.
The Great!
I've personally experienced the results of this organization in...
I feel better
Ways to make it better...
If I had to make changes to this organization, I would...
change nothing
June 14, 2011
As one of NFCA's Athletes for Awareness since early 2009, I put my support strongly behind their excellent work in the realms of education and awareness related to celiac disease and the broader gluten-free community. NFCA's efforts to increase rates of successful diagnosis, to educate and train restaurants and medical professionals, to reach out the gluten-free community via educational webinars and other events, and to share the latest results of cutting edge research make them a major player in the celiac and gluten-free community.
The Great!
I've personally experienced the results of this organization in...
As someone with celiac, as a GF blogger, as a cookbook author, and as an athlete, the NFCA is never far from the work I do.
Ways to make it better...
If I had to make changes to this organization, I would...
Increase their capacity to reach their target audiences. Especially undiagnosed and recently diagnosed celiacs who would greatest benefit from the NFCA's information.
June 12, 2011
NFCA provides the best online source for the latest information about celiac disease and living gluten free. Their work to provide information and to educate caregivers, restaurants, schools, and those who are beginning the gluten-free journey or those who suspect they may have gluten issues is outstanding. They are spreading awareness with webinars, social media and downloadable brochures and fact sheets that make it so easy to spread the word and educate which makes the world a whole lot safer for those living with celiac disease.
The Great!
I've personally experienced the results of this organization in...
I use them as the resource for news and support for my gluten-free advocacy roles in my community and on my blog.
Ways to make it better...
If I had to make changes to this organization, I would...
No changes, they are doing a fantastic job.
June 12, 2011
I am a physical therapist who also has celiac disease. I first learned of the NFCA when I became interested in their GREAT education program for allied health professionals. After seeing the quality of material that they were producing, I happily referred others to them for top notch information on celiac disease, gluten intolerance, and how to live well with these issues. Since then, I have worked directly with the NFCA's incredible staff on creating and presenting educational materials for the public. The NFCA and its staff consistently produce quality information that is easily accesible for the lay person and medical professional, in addition to producing events to increase awareness of celiac disease and the importance of feeding us safely to the restaurant and food service industry. The NFCA are leaders, and always the first resource I point anyone to who is interested in learning more about celiac disease and gluten intolerance.
The Great!
I've personally experienced the results of this organization in...
The amazing feedback from individuals who have received information from them.
Ways to make it better...
If I had to make changes to this organization, I would...
Give them more money to do their great work!
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