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28 Reviews
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October 4, 2014

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October 4, 2014

After testing positive for CDH1, my geneticist told me about NSFC and it has been a great resource of information and advice. I have not yet decided to have a total gastrectomy but the blogs and posts on what it is like have been a great resource so far!
October 4, 2014

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October 4, 2014

I heard about NSFC from my doctor after I tested positive with the CDH1 gene Mutation. It has been a huge resource as I've gone through the process of having Total Gastrectomy. The information and stories of others are real and have given me comfort and have prepared me for this life changing journey. Thank you No Stomach For Cancer for being there!
October 3, 2014

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October 3, 2014

As a total gastrectomy survivor after finding out I had the CDH1 genetic mutation, this organization helped through the pre and post surgical stages. They are awesome and more awareness is needed, especially as how my 2 children have a 50% chamce of carrying the same gene..
October 3, 2014

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October 3, 2014

The information that I obtained from the No Stomach for Cancer Website and from it's founder has been invaluable to me. After losing two close family members to stomach cancer and having two members with lobular breast cancer, I came upon this foundation and realized that there was a genetic component to all 4 of these cancer cases. I, subsequently, was tested for CDH1 gene mutation. After finding out that I had the mutation, I had a total gastrectomy. The personal stories on the NSFC website helped me navigate my recovery.


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

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