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14 Reviews
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December 18, 2013

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December 18, 2013

I discovered NSFC when my father was diagnosed with gastric cancer and then found out he carried the CDH1 gene. My father was having issues after having his stomach removed and I reached out to NSFC for some advice. Somebody got back to me within 10 minutes. She was extremely helpful and sympathetic. My father passed away a year after his diagnosis. I found out I was positive for the CDH1 gene 2 weeks after my dad died. 5 more family members are carriers of this gene. NSFC was our saving grace!!! It was so helpful to talk to others who have gone through what my family was going through. So far, 5 members in my family have had a prophylactic total gastrectomy. NSFC prepared us so well for surgery and helped us find the best surgeon. They were there for us when we had questions after our surgery. I would strongly encourage anyone going through this to reach out to NSFC. I couldn't have done it without them!!!

More feedback...

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

November 5, 2013

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November 5, 2013

I donated to No Stomach for Cancer, Inc and participated in the November 2, 2013 walk for my husband who passed away from stomach cancer.

I wonder where all the money goes? What research is it donated to? The only mention I could find was a 2012 tax report saying 20,000 went to the
University of Otago, New Zealand. At that site I could not find what was being researched for gastric cancer.

It is a good site for connecting to others going through gastric cancer, survivors and caregivers. Plus it offers a wealth of information. But, I would like more availability of information on where the money is going.

Ways to make it better...

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

List the research organizations where our money is going.

More feedback...

Was your donation impactful?

Unlikely

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

Unlikely

How likely are you to donate to this group again?

Unsure

When was your last experience with this nonprofit?

2013

October 2, 2013

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October 2, 2013

I have also been a member of the public, volunteer and donor for this organization as well, but I am writing this from a Client Served aspect. NSFC has been the most valuable resource for myself any my family since we discovered the CDH1 gene mutation for gastric cancer. While the organization greatly serves those with this particular gene mutation, it is equally appropriate and resourceful for anyone with any type of gastric cancer.
While I find their awareness and advocacy campaigns to be excellent and very important, I am most thankful for the grant money they provide for research into combating this very deadly form of cancer.

More feedback...

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?

2012

July 5, 2011
1 person found this review helpful

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July 5, 2011
1 person found this review helpful

A few years ago it was discovered my family was cursed with a brutal form of stomach cancer known as CDH1. Our lack of knowledge of what we were dealing with meant the loss of two family members. To many doctors and consultants this hereditary form of cancer was unheard of.
The knowledge
gained from No Stomach for Cancer has proved extremely valuable in maintaining the life for many family members. Stomach or no smomach, the knowledge my family gained from this organisation has saved lives for which we are all truely grateful. Without the knowledge gained many more family members would have died at some point during their life due to this cancer.

Karen Chelcun Schreiber ,the founder, is such an inspirational and strongly motivated person. Her endless efforts to acheive the organisations mission to increase awareness of this cancer is literally saving lives and providing great support to those affected. Karen establishes personal relationships with each family and its so good to see that her efforts are recieving recognition.

The Linstead Family cant thank No Stomach For Cancer enough and will forever continue to support this very worthy cause.

Andrew Linstead

The Great!

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

The knowledge and support received from No Stomach For Cancer has had a great impact on my family. The results of this organisation are seen on a regular basis and are regularly communicated through organisational website.

Ways to make it better...

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

Continue to give it the recognition it deserves. The organisation is doing incredible work and is rapidly growing.

June 27, 2011
1 person found this review helpful

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June 27, 2011
1 person found this review helpful

Two years ago, I discovered that a mutation in the CDH1 gene runs in my family and I tested positive for it. What this means is that I would face a extremely high risk of developing a stomach cancer that is so difficult to detect, it is usually not found until it's already in stage 3 or 4. It also puts me at a very high risk for a certain type of breast cancer. The best option for dealing with this risk, right now, is complete removal of the stomach, which is an overwhelming proposition. I've spent the past two years researching, debating, and just plain stewing over this decision. Without the help, advice, and connections made on NoStomachForCancer.org, I would be lost. This organization has made me realize, that although there are only somewhere around 100 families living with a CDH1 mutation, they are facing the same kinds of decisions I've had to make, and they are thriving. How many other families like mine are out there - families with a long history of cancer feeling that they are simply "doomed." Although learning of the scientific proof that I am at a high risk was difficult, I feel so much gratitude that I now know. And, although the best solution to this problem is a difficult one, I feel lucky to have one. I also hope that through organizations like No Stomach For Cancer, we'll be able to raise awareness so that future generations will have better options, possibly even a cure.

The Great!

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

the most important decision in my life.

Ways to make it better...

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

spread the word about it to others.

June 26, 2011
1 person found this review helpful

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June 26, 2011
1 person found this review helpful

This site has been a great outlet for me in relation to my feeling like I can somehow impact change and assist others in their struggle to
make decisions and be supported through the process of either making a lifechanging decision or help a family member through it I joined after I had
already been through all the decisions related to my familys stomach cancer but I wished this site had been around before I had to go through what I did as it would have made things so much easier especially in relation to getting current factual information I have been able to referr many others to this site for help that they sometimes aren't getting from Their current health care provider due to their lack of knowledge re current guidelines for stomach cancer and genetic testing

The Great!

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

Relation to supporting people who are making life decisions related to stomach cancer and genetic testing

Ways to make it better...

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

Find a way that all oncology clinics would have access to knowing how to refer their stomach cancer patients to this web site

June 26, 2011
2 people found this review helpful

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June 26, 2011
2 people found this review helpful

Back in early 2010, I was diagnosed with stage 3 stomach cancer at the age of only 34. At the same time, I was told that my stomach would need to be removed, and i would likely need to undergo aggressive chemo for a period of months.

From one second to the next, I went from being an
extremely physically fit individual, to being defined as a cancer patient with a bleak outlook. Being told that my stomach would be entirely removed was obviously an enormous shock. I knew of partial gastrectomies, but total gastrectomies was new to me.

I decided that information was the key for me. I had to understand what lay ahead of me, so I went surfing!

Unfortunately, I only found negative information in blogs. Information about gastrectomies, and surviving gastrectomies was limited and / or negative. It wasnt overly helpful. Regardless, I went in to the operation in a positive frame of mind!

After my operation, i discovered NSFC. I found this site very useful, and my only regret was that my early searches didnt link me to this site. The best thing for me about NSFC is that it helped me to understand the science behind my illness, and linked me to numerous resources, which have answered most of my questions. In my case, it is clear that the cancer was genetic, and my family now understand exactly why generations of members have been dying young. My experience, linked with the information from NSFC will ensure that I will be the last in a long line of generations to suffer the effects of an advanced stomach cancer.

My brother recently was diagnosed with stage zero cancer and had a total gastrectomy. He was back at work within 5 weeks. This is a smaller layoff than some sporting injuries, and is all due to our family now being aware of the illness, how to search for it, and how to manage symptoms. This can be directly attributed to the support received from Karen and the crew at NSFC.

NSFC hasn't answered all of my questions. It is impossible, as the science is in its infancy. Only time will answer many of these questions, but I am confident that with each new discovery and experience, NSFC will continue to publish it, and will continue to be an important resource for the thousands of people out there like me.

Thank you NSFC!

Cheers from a sunny Austria!
Brett



The Great!

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

The key for my family was learning about the genetics behind my cancer. This has already been useful in identifying 8 members of my family who are at an extreme risk of developing Stomach cancer. These family members now have choices. In the past, my family members simply died young!

Ways to make it better...

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

The site needs to link in google to other important key words.

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?

Google search on Genetics + stomach cancer.

When was your last experience with this nonprofit?

2011

June 24, 2011
1 person found this review helpful

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June 24, 2011
1 person found this review helpful

Thank goodness for this organization and to Karen Chelchun. I am a nurse and began to speak to one of my supervisors about some medical concerns I was having about my stomach. She got me in touch with Karen and she in turn directed me to the very people that could help me. Both of my grandfathers and an uncle had died from stomach cancer years ago. Through this organization, I learned that there is a specific kind of gastric cancer which is hereditary. I am now in the process of genetic testing. I tell everyone I can about my experience and hopefully they will pass it on to others. I wouldn't have had any knowledge of this without this organization and to Karen who helped to start it due to her own diagnosis. Blessings to her and to all those who will be in need of help. This organization is the one that will give you the direction and courage to overcome this specific cancer.

The Great!

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

going to the medical facility that had knowledge of this disease.

Ways to make it better...

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

not make any changes to this organization as they are trying to get the word out as much as possible

June 22, 2011

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June 22, 2011

I have been diagnosed with the CDH1 gene which increases my chances of having stomach cancer to about 80%. My father and uncle have both passed away from Stomach cancer and my other uncle and aunt have both had their stomachs removed as a result of cancer. Due to the poor detection of stomach cancer through endoscopy, it is advised that those with the CDH1 gene have a total gastrectomy (removal of the stomach) which eliminates all risk. Based on our strong family history, I have elected to have the surgery. During my research of this gene I came across the NSFC website and have found it invaluable!! It gives factual information as well as personal experiences from others who have had TG and the opportunity to take part in discussion forums. I access this website on a weekly basis and will continue to do. It is very comforting to find such a site when diagnosed with this quite rare but deadly gene and to hear the experiences and receive the support from other members

The Great!

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

enabling me to find out alot of vital information relating to my condition and therfore helping me make an informed decision to embark on my life changing surgery. Reading the personal stories and join into discussion groups has really given me comfort and made me feel as though I am not alone through this. The founder of this site, Karen, has also corresponded with me on several occasions about her experience and knowledge which has been amazing.

Ways to make it better...

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

I cant think of any changes I would make - I think it is a wonderful organisation. I guess the only thing that would help is to be able to assist the site with more public awareness of this fantastic organisation and education around stomach cancer.

June 22, 2011
1 person found this review helpful

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June 22, 2011
1 person found this review helpful

Our 22 year old son Tyler was diagnosed with stomach cancer on December 30, 2009. In January 2010 we found out that his cancer was terminal. Tyler was a four year medal winning swimmer for the University of Wisconsin Whitewater. His request for one last swim with his teamates and the special graduation ceremony that the University held for him made headline news in our area. After reading about his story Karen from No Stomach For Cancer reached out to us with information and support. Tyler lost his battle on February 11, 2010 just 6 weeks after being diagnosed. The No Stomach For Cancer organization has a wonderful tribute telling Tyler's story on their website. They worked with Tyler's high school swim team in December of 2010 to hold an event that would raise awareness of stomach cancer. They are working with us to provide information that we can use at an event in July to again raise awareness of this deadly disease. No Stomach for Cancer is a great organization that provides information and a support network for anyone dealing with stomach cancer.

The Great!

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

No Stomach for Cancer has provided us with great support and information.

Ways to make it better...

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

I would like to see more ways that people can get involved to help raise funds and awareness so that one day there can be an early diagnosis that would help make stomach cancer a more treatable cancer so that no other parent ever has to go through what we did.

More feedback...

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

How did you find this group?

They found us.

When was your last experience with this nonprofit?

2011

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