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A Network for Gastric Cancer Patients, Survivors and Families

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“Top Medical Advances of the Decade” include mapping the human genome; CDH1 gene mutation is example

Posted by Karen Chelcun Schreiber On December - 30 - 2009

Watch the video about Mapping the Human Genome and Stomach Cancer.

“Good Morning America” considers the discovery of genetic markers such as the one causing HDGC to be one of the top medical advances of the decade. Stomach cancer is mentioned specifically in this video from December 29, 2009 featuring Dr. Tim Johnson’s descriptions of medical breakthroughs. We are confident that the efforts of all of us impacted by HDGC and other diffuse gastric cancers, have already resulted in this national coverage: one small step in educating the world, on our journey to prevent gastric cancer and ultimately to find a cure!

Education, Front, Genetics, HDGC, Hereditary Diffuse Gastric Cancer

HDGC Research: In pursuit of stomach cancer prevention

Posted by Karen Chelcun Schreiber On November - 11 - 2009

A  prestigious James Cook Fellowship has been awarded to researcher Parry Guilford, University of Otazo, New Zealand, to pursue innovative research aimed at reversing or preventing the very early stages of stomach cancer.

Read Parry Guilford’s personal post detailing his exciting research plan for HDGC / CDH1 gene research.  His two year fellowship will begin in March, 2010.

 

The University of Otago announces Parry Guilford’s exciting award for  stomach cancer research.

More information about The Royal Society of New Zealand James Cook Research Fellowships.

Front, Genetics, HDGC, Hereditary Diffuse Gastric Cancer, Research

New Zealand Government Research Fellowship: Focus on HDGC and diffuse gastric cancer

Posted by Parry Guilford On November - 11 - 2009

Parry Guilford; Cancer Genetics Laboratory, University of Otago

The James Cook Fellowship provides funding for two years of concentrated research, free of teaching and administrative commitments.  My planned research is built broadly around establishing methods to assess individual risk of developing gastric cancer.  As we all know, CDH1 mutation carriers have a lifetime risk of around 70-80% of developing diffuse gastric cancer, but we have little understanding of an individual’s actual risk at any particular point in time. A better understanding of this would help individual carriers decide what the best time for surgical intervention is.  Read the rest of this entry »

Front, HDGC, Hereditary Diffuse Gastric Cancer, Research

Great news about the Chelcun Family Fund For Stomach Cancer Research

Posted by Karen Chelcun Schreiber On September - 28 - 2009

The Chelcun Family Fund for Stomach Cancer Research has accomplished much, in a very short time. Our website is a leading resource (if not the leading resource) for information about HDGC and support for HDGC families worldwide. We are writing to bring you up to date on what’s been happening, and to announce a major step forward.

Our website at www.BeStrongHearted.org took off in a way none of us had anticipated. The statistics are astounding: visitors from 81 countries and every state in the United States; thousands of page views; families across the globe sharing their stories and connecting with others for support and information.

We’ve sparked a research study that will be led by Dr. Gregory Lauwers, a pathologist at Massachusetts General Hospital. Details about the study will be announced soon on our website. Read the rest of this entry »

Education, Families, Front, Fundraising, Get Involved, HDGC, Hereditary Diffuse Gastric Cancer

TV New Zealand Close Up: The Kiwis who inspired a Grey’s plot

Posted by Karen Chelcun Schreiber On June - 14 - 2009

View an uplifting and interesting Close Up news broadcast about Hereditary Diffuse Gastric Cancer (HDGC) on TV New Zealand featuring Parry Guilford, the scientist who first identified HDGC and the CDH1 gene mutation that causes HDGC.  His discovery, only eleven years new, has been saving so many lives, including in the Chelcun family and many other families worldwide.  The Close Up includes interviews with the original families in whom HDGC was first identified.  We must find ways to fund the promising research that will ultimately lead to the prevention of this particular cancer as well as other related cancers.

Families, Fundraising, Genetics, HDGC, Hereditary Diffuse Gastric Cancer, News, Research

Hereditary Diffuse Gastric Cancer (HDGC): A Resource for You

Posted by Karen Chelcun Schreiber On June - 13 - 2009

HDGC...Now What?

Be sure to visit HDGC…Now What?

 

You, or someone close to you has been diagnosed with HDGC.  Now what?  The search is on, for information, for support, for encouragement.

  
We are committed to developing this network, a valuable source of credible and useful information.  Join our community of support for all of those touched by HDGC or other types of stomach cancer.  Your participation can be as little or as much as you desire.  You decide. Read the rest of this entry »

Education, Families, Fundraising, Gastrectomy, General, Genetics, Get Involved, HDGC, Hereditary Diffuse Gastric Cancer, Lobular Breast Cancer, Mind, Body, Spirit, News, Nutrition, Pregnancy, Research

Fleming’s Hosts Benefit Wine Tasting Event

Posted by Karen Chelcun Schreiber On May - 4 - 2009

flemings
Madison, WI

Dear Friends & Family,

I am thrilled to announce an event at Fleming’s Prime Steakhouse & Wine Bar in Madison, WI. The Fleming’s 100 Wine Tasting will benefit the Be Strong Hearted® campaign of our Chelcun Family Fund for Stomach Cancer Research.  The cost to attend is $25 per person, of which ninety-five percent will benefit the fund.

I would love to see you there, and I hope you will extend this invitation to others you know who may enjoy the event. A summer day will provide the perfect opportunity to take advantage of their lovely outdoor patio area, too.

We extend much gratitude to Andy Tsigolis, the Operating Partner of Fleming’s Madison, for his generous support of our cause.

Kia Kaha,

Karen 

www.BeStrongHearted.org continues to reach people worldwide who are just beginning to learn about hereditary gastric cancer. Affected families have expressed their thanks for our mission. Research is proceeding with wonderful personal contacts and commitments from key scientists. The scientists have shared their appreciation for our awareness and education efforts, and have said that “if you are having contacts from people around the world [and we are], then you are saving lives.” We appreciate your support, as it allows us to support and advance this very important research.

Visit Fleming’s Madison.

Front, Fundraising, Get Involved

Kia Kaha

Posted by Karen Chelcun Schreiber On March - 21 - 2009

By Ryan Gay
Kernersville News, NC
March 2009
lisa-foster-england

The stomach is an organ many people take for granted, not really thinking about how much it helps the body. Except in instances of allergies or diets we don’t really have to concern ourselves with what we eat or when we eat.

There is simply a familiar pang in our abdomen that tells us our body needs to eat.

For one local woman, keeping her body fueled is not that easy.

Due to a genetic mutation that caused two stomach cancers, Lisa Foster England had to have her stomach removed.

Just over a decade ago, a scientist in New Zealand was studying an aboriginal people known as the Maori and discovered a mutation that greatly increases the risk of a deadly stomach cancer that is hard to detect.

The official name of the gene is cadherin 1, type 1, E-cadherin (epithelial), more commonly known as CDH1. Read the rest of this entry »

Families, Genetics, News

Lily’s Cookies

Posted by Karen Chelcun Schreiber On March - 14 - 2009

lily-cookieslily-gregMy name is Lily and I’m in 4th grade. I would like to tell you about my cookie project. I wanted to help with stomach cancer research after I heard that our family friend, Mr. Greg, had stomach cancer. My mom and I thought of ways to help. Then I came up with an idea, “Since I make fabulous homemade chocolate chip cookies, maybe I could make people a dozen cookies in exchange for a ten dollar donation to the Chelcun Family Stomach Cancer Foundation?” So far I’ve raised $410 dollars for the foundation. My plan is to keep making cookies as long as there is stomach cancer. By the way Kia Kaha means “Be strong hearted” which is the motto for the foundation.

Someone You Should Know: Lily Beyer Article & Video
January 2009

Fundraising, News

No Stomach For Food - Or Cancer

Posted by Karen Chelcun Schreiber On March - 8 - 2009

By David Wahlberg
Wisconsin State Journal
March 2009

Karen and Sons

She never gets hungry. Regular meals make her sick. She can’t eat and drink at the same time.

Karen Chelcun Schreiber has no stomach.

It’s not that her stomach is mostly bypassed like after weight-loss surgery. She has no stomach at all. She had the bean-shaped organ removed last summer.

Read the article in its entirety  . . .  No Stomach For Food - Or Cancer

Families, Genetics, News

Going Under the Knife to Head Off Cancer

Posted by Karen Chelcun Schreiber On March - 2 - 2009

By Radha Chitale
ABC News Medical Unit
March 2009

brian-greg

Prophylactic Surgery One Option for Those at Risk of Cancer

 

Few wouldn’t balk at the idea of prophylactic surgery — the removal a healthy organ or gland that shows no sign of cancer in order to prevent cancer from developing in that organ or gland.

 

Brian Chelcun with his father, Greg, in 2007. Brian had a prophylactic operation to remove his stomach two weeks ago, soon after his father died of stomach cancer on February 8th.

(WCVB)

In other words, prophylactic surgery involves cutting from the body a perfectly fine organ.

Or a ticking time bomb.

Or a perfectly fine organ.

And that is the dilemma facing a segment of the population who, due to family history, genetics or personal medical history, are saddled with a higher risk of cancer than the rest of the population and may have to take drastic steps to prevent a disease that kills over half a million Americans each year.

But Brian Chelcun, 26, never wavered for a moment.

“I was seeing my dad go through the effects of having stage IV stomach cancer,” said Brian, whose father died Feb. 8 of the disease. Chelcun was released from Massachusetts General Hospital in Boston last week after a gastrectomy to remove his stomach.

“Here’s a chance to avoid going through something that is so hard, and difficult to cure,” he said. Read the rest of this entry »

Families, Genetics, News

Erin’s Gift

Posted by Karen Chelcun Schreiber On February - 16 - 2009

Erin's Gift, Erin and her Mom“We Have to Stop Burying Our Children”

Saskatchewan, Canada.  The Lawrence Family found out the hard way; they inherited a genetic mutation (CDH1) from their ancestors.  The Sutherland Family has passed down this rare form of stomach cancer.  They have lost two young people to Hereditary Diffuse Gastric Cancer (HDGC).  The youngest member of the Lawrence family had a prophylactic gastrectomy at the age of 18, because he too inherited the CDH1 gene mutation.

They are reaching out to all relatives of the Sutherland Family Tree, trying to inform them of this genetic killer.  By sharing their story Mr. Lawrence hopes to save someone’s life.

Find the full story, which includes a CBC Radio interview series about Erin, Mr. Lawrence’s daughter, this courageous family, and their quest to identify other family members at risk at Erin’s Gift.
February 2009.

Families, Genetics, News
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    • Karen Chelcun Schreiber wrote on Cathy O’s wire:   1 hour, 37 minutes ago

      I’m thinking of you Cathy and sending positive energy your way. Good luck to you! Keep writing, let us know how you are progressing. Lots of questions come up after TG - post them! We’re all out here, ready to help in any way we can.

    • Cathy O wrote on their own wire:   5 hours, 21 minutes ago

      Tomorrow is the big G day. I have been wined and dined, and tead and lunched. Haven’t gained any significant weight though, food in equals food out for me.
      I am pretty calm about the surgery. Thank you to this site for all of the information. There IS life after gastrectomy and [...]

    • Karen Chelcun Schreiber wrote a new blog post: A story of hope: Elizabeth Lambert shares her family story   12 hours, 26 minutes ago

      Elizabeth Lambert, a teacher and a member of the Board of Directors of No Stomach For Cancer, Inc., is dedicated to raising awareness and educating the public about diffuse stomach cancer.  Like many others, her family has been affected by a hereditary form of stomach cancer. 

      The Chronicle aired a program about genetics on January 22, [...]

    • Tammy Ayson wrote on Cecily Wilson Guiney’s wire:   2 days, 3 hours ago

      Thank you so much for your message Cecily. I think it is just amazing that we can ‘chat’ to others just like ourselves, even if we are oceans apart. I still feel amazed at how well my recovery has gone thus far and it is just lovely to read other personal stories that reassure me [...]

    • Tammy Ayson and Cecily Wilson Guiney are now friends   2 days, 3 hours ago

    • Chris and Cecily Wilson Guiney are now friends   4 days, 11 hours ago

    • Chris updated the “Bio” information on their profile   4 days, 16 hours ago

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