Three members of one family showing their gastrectomy scars, which they refer to as their “lifelines!”
About
Each of us on the Save Our Stomachs team has had our lives, and our family’s lives, upended by HDGC. Without advancements in diagnostics and treatment, our descendants lives will also be impacted. We are motivated to make a difference for all who are now facing life with HDGC and to ensure ongoing research for the benefit of future generations.
About
Each of us on the Save Our Stomachs team has had our lives, and our family’s lives, upended by HDGC. Without advancements in diagnostics and treatment, our descendants lives will also be impacted. We are motivated to make a difference for all who are now facing life with HDGC and to ensure ongoing research for the benefit of future generations.
Three members of one family showing their gastrectomy scars, which they refer to as their “lifelines!”
Meet Parry
How Did We Get Here?
There is a backstory to how Save Our Stomachs came into being. The story begins with the forming of an unlikely friendship. A friendship between a New Zealand based cancer geneticist and an American patient whose life was saved when she discovered his research. A relationship of mutual respect, curiosity, and the sharing of critical information each had for the other developed, when following a stomach cancer diagnosis, Karen Chelcun Schreiber reached out to Professor Parry Guilford. Each has since expanded their service to the community of HDGC affected families in remarkable ways because of their unlikely meeting and subsequent friendship. Here, in part, is how their meeting led to change in what patients in the U.S. and around the world would learn about HDGC, and how the Save Our Stomachs campaign came into being.
Parry shows Karen the DNA sequencer used in the discovery of the CDH1 mutation at research lab in New Zealand, 2011
Now Is The Time
BY KAREN CHELCUN SCHREIBER
“Dear Doctors,”
I wrote, “I have read with great interest the media release of March 17, 2007 entitled ‘Stomach Cancer Discovery Gives New Hope To Families’.”
I had just figured out mine was a Hereditary Diffuse Gastric Cancer (HDGC) family, having just tested positive for a CDH1 gene mutation. I wrote an email in June 2008, three months before my preventive total gastrectomy was to take place in Boston MA.
in Looking for a miracle I wrote to the New Zealand team that discovered the connection of a CDH1 gene mutation and HDGC and published this paper. Parry Guilford, Bostjan Humar and Simon Ancelle.
I said, “I am wondering if you can provide an update on the findings of your study. Is it possible with your research that there may be an alternative course of action for me to the total gastrectomy? Since I only have three months until my surgery date, time is of the essence.”
I Was Desperate, and I Was Out of Time
I was grasping at straws, hoping for an alternative to my total gastrectomy only months away. I was on my own, with virtually no resources at that time. I found Dr. Sam Yoon, a surgeon in Boston MA who, at the time, had performed the largest series of preventive total gastrectomies for HDGC. I was #7.
New Zealand 2011
Although there was no miracle solution, what I did get from Parry was a kind, thoughtful and encouraging message with the positive outlook that I needed, and the confidence that I was making the right decision, and that I could do this.
This was the start of my passion to support HDGC research, to raise money for the work taking place in New Zealand, and to help others who may not yet know that they too are affected by this hereditary cancer syndrome. This was the start of a long journey with Parry, my lifesaver, my colleague, and best of all, my friend.
Advocacy – My Passion
I started the Chelcun Family Fund for Stomach Cancer Research, and the Be Strong Hearted website to raise awareness. That led to founding No Stomach For Cancer (NSFC), then an HDGC advocacy site, active involvement in the International Gastric Cancer Linkage Consortium (IGCLC), and the establishment of an HDGC Research Endowment Fund.
Madison, Wisconsin 2022
With One Foot In Today And
An Eye On The Future
I’ve been committed to working to fund this endowment for several years and realized the time to do this right is Right Now. It’s time for that miracle I was looking for 14 years ago – and it’s so, so close.
Incredibly dedicated people from all walks of life, individuals affected by HDGC and equally committed to funding the research that will bring change, have banded together to launch the Save Our Stomachs campaign.
Right now. For the present generations. For the children. For the future.
Parry Guilford was born and grew up in the South Island of New Zealand, not far from where he works today at the University of Otago in Dunedin. The father of four grown up children, Parry spends his holiday time fishing, hiking and skiing, each with either decreasing speed, skill or success.
Parry Guilford was born and grew up in the South Island of New Zealand, not far from where he works today at the University of Otago in Dunedin. The father of four grown up children, Parry spends his holiday time fishing, hiking and skiing, each with either decreasing speed, skill or success.
Meet Parry’s Angels
NOV 1,1957 – JULY 3, 2023
HDGC Patient & Research Advocate
Madison WI
Sadly, the HDGC family lost Karen to Pancreatic Cancer in 2023. She parted the earth July 3, surrounded by her loved ones. To have known Karen was a gift and a blessing. She was an advocate for and mentor to many. Her life was one of service and she will be missed dearly. We extend our condolences to her family and loved ones.
“While November is Stomach Cancer Awareness Month, it is always time to raise awareness.”
– Karen Chelcun Schreiber
The following is an excerpt from her obituary, followed by Karen’s own description of her life and advocacy work on behalf of families faced with an HDGC diagnosis.
“Karen lost both her mother and brother to stomach cancer, and as a result she dove headfirst into research and patient advocacy. As a founder of No Stomach For Cancer in 2009, she led the charge in advocating for proper care, preventative treatment, awareness and education about stomach cancer. She participated in the creation of international standards of care for patients with HDGC. Her impact on families across the world has earned her numerous awards and recognition for her advocacy and philanthropic work. Karen lived the last 15 years of her life without a stomach due to Hereditary Diffuse Gastric Cancer Syndrome, and she helped guide countless members of the HDGC community through the same process. Most recently, along with “Parry’s Angels” she helped found Save Our Stomachs, a campaign that provides sustainable funding for research to identify drugs that will prevent the development of this cancer and identify a better way to determine cancer risk.”
Read Karen’s full obituary on the Tributes page.
PERSONAL
I’m an optimistic realist. I love to laugh, often at myself. I am learning how to focus on Right Now! I have the most amazing family, friends and colleagues. The silver lining of HDGC has been the people I have come to know, to help, to work with, and to love, all throughout the world.
While November is Stomach Cancer Awareness Month, it is always time to raise awareness.
Read More
~ In 2008 I discovered HDGC in my family following my big brother’s gastric cancer diagnosis.
~ Two lives lost to gastric cancer: mother, 1982 age 52 and brother, 2009 age 59.
~ Five stomachs sacrificed: self, 2008 age 50, brother, son, nephew, niece, ages 49, 39, 26 and 26.
~ One double mastectomy: age 30.
It’s time for better options for our next generations.
Please help us build the HDGC Research Endowment Fund, For The Future.
ADVOCACY INTERESTS
Hereditary Diffuse Gastric Cancer: Helping patients and families understand risk, make informed decisions and advocate for themselves. Support HDGC research through funding and opportunities for participation in registries, surveys, and clinical trials.
Diffuse gastric cancer and lobular breast cancer research
PROFESSIONAL EXPERIENCE
31-year career in accounting, technology, and law firm administration, 1974 – 2005
Retired at the ripe old age of 47
ADVOCACY ACTIVITIES
- Organized Parry’s Angels Team & together launched Save Our Stomachs (SOS) $1.5m Fundraising Campaign, 2022
- Established HDGC Research Endowment Fund, University of Otago, Centre for Translational Cancer Research, Dunedin NZ, 2018
- International Gastric Cancer Linkage Consortium (IGCLC), Patient Advocacy Group Member, Wanaka, New Zealand, 2018
- Launched Hereditary Diffuse Gastric Cancer educational website, 2017
- Founder: No Stomach For Cancer, 2009, Board service 2009 – 2015
- International Gastric Cancer Linkage Consortium (IGCLC), Chair of Patient and Dietician Group, 2nd Consensus Meeting, Nijmegen Netherlands, 2014
- Founder: Chelcun Family Fund for Stomach Cancer Research and Be Strong Hearted educational website, 2008
PUBLICATIONS
- Kaurah P, Talhouk A, MacMillan A, et al. Hereditary diffuse gastric cancer: cancer risk and the personal cost of preventive surgery. Fam Cancer 2019;18:429-438.
- Blair VR, McLeod M, Carneiro F, et al. Hereditary diffuse gastric cancer: updated clinical practice guidelines. Lancet Oncol 2020;21:e386-e397.
- van der Post RS, Vogelaar IP, Carneiro F, et al. Hereditary diffuse gastric cancer: updated clinical guidelines with an emphasis on germline CDH1 mutation carriers. J Med Genet 2015;52:361-74.
- Roberts G, Benusiglio PR, Bisseling T, et al. International Delphi consensus guidelines for follow-up after prophylactic total gastrectomy: the Life after Prophylactic Total Gastrectomy (LAP-TG) study. Gastric Cancer 2022.
- Drake J, Schreiber KC, Lopez R, et al. Establishing a center of excellence for hereditary diffuse gastric cancer syndrome. J Surg Oncol 2019;119:673-674.
- Lauwers GY, Mullen JT, Chelcun-Schreiber KE, Chung DC. Familial Gastric Cancers: A Review With Focus on Hereditary Diffuse Gastric Cancer Syndrome. Pathology Case Reviews 2014;19:66-73.
CONTRIBUTOR
- Hereditary Diffuse Gastric Cancer (CDH1): Patient Process of Discovery (Cheryl Herspberger), 2019
- NCCN Stomach Cancer Guideline for Patients 2016: Review panel and contributor
PARTICIPANT
- Memorial Sloan Kettering HDGC Research Study
- Stanford Gastric Cancer Registry
- All of Us Research Project
- National Institutes of Health: Hereditary Gastric Cancer Syndromes: An Integrated Genomic and Clinicopathologic Study of the Predisposition to Gastric Cancer
- WiscShare, UW Carbone Cancer Center Translational Science BioCore Cancer Research Program, Madison WI for Pancreatic Cancer
HONORS | AWARDS
THAD HAMILTON
President, DLH Foundation
San Diego CA
THAD’S STORY
In 2007, my sister Deana Hamilton Hughes passed away at 39 years old from signet ring cell gastroesophageal cancer. Following her death, I went to the doctor and had an endoscopy to make sure he didn’t see anything similar to my sister’s cancer inside my GI tract. Once I got the “no issues” message from my doctor, I never thought about it again.
Read More
Then, in early 2020, a visit to my doctor for an “early satiety” complaint turned into a Hereditary Diffuse Gastric Cancer diagnosis caused by the CDH1 gene mutation. Although she wasn’t ever tested, my sister obviously carried the gene mutation. My Mom had the gene mutation and never developed cancer that we know about. She likely received the gene mutation from her father, who had a partial gastrectomy at the Mayo Clinic, and died a few years later of stomach cancer. My cousin Ryan and his Mom (my Aunt) Kathy are the only others in the family that we know carry the CDH1 gene mutation. Ryan has two sons that are too young to be tested. Finally, Kristen and I have one son, Wyatt. Sadly, I passed the CDH1 gene mutation on to him.
THAD’S PERSONAL LIFE MISSION
My personal life mission is to love everything life delivers to me (Amor Fati) and do my best to help people I love fulfill and enjoy their own life mission.
THAD’S CAUSE
As you might imagine, passing the gene mutation on to Wyatt was devastating to me and my family. With that in mind, I fully commit to a new personal life mission to “Save Our Stomachs”. I have other good friends (that I consider family) in our CDH1 community that share our scenario of having passed the gene mutation on to their kids.
I believe our cause may encourage you to think a bit more seriously about supporting our Foundation fund raising targets more than other causes the next year or two to help me achieve a specific goal I have set for myself.
THAD’S GOAL
My goal is to raise $1,000,000 dollars. $250,000 by the end of 2022, and $750,000 by the end of 2023. Here is my “Why” Statement to convince you to help me:
THAD’S CAUSE AND GOAL “WHY” STATEMENT
The cause of HDGC is my CDH1 Gene Mutation. I passed this CDH1 Gene Mutation onto my son, Wyatt Hamilton. The current protocol for Wyatt, and other patients with the CDH1 Gene Mutation, is to have a prophylactic gastrectomy between the ages of 20 and 30 years old to “most successfully prevent” getting stomach cancer. Wyatt is currently 20 years old. The urgency of my goal is immediate.
My effort right now, and for the rest of my life, is to spend my healthy days doing everything I can to save Wyatt’s stomach. I can specifically do that in two ways: (1) Fund Parry Guilford’s Otago University Research Lab with an Endowment Fund to help him continue his work, and (2) Fund Dr. Jeremy Davis at the NIH to run a new Human Clinical Trial. The Human Clinical trial is almost ready to implement, and it’s a chemo prevention drug that Parry Guilford’s Lab is working on so Dr. Jeremy Davis can “put it into production”, so to speak. This Human Clinical Trial, should Wyatt and other patients decide to enter it, could allow them to delay Total Gastrectomy for a longer period of time with more assurance cancer won’t develop while they wait.
I’m asking my friends and family to make their donations to the DLH Foundation as often as possible, and we will pass those donations through to Otago and NIH. My goal is to raise and then donate the $1,000,000 to the two recipients. I will publish the financial results as frequently as necessary.
POLLY ALEXANDRA
NICKOLSON
Registered Nurse
Albuquerque NM
“Polly wanna cracker?” Yes, I do! Since my stomach was removed in June of 2022 due to my CDH1 genetic mutation, I have been hungry all the time! I also had my breasts removed in April of 2021. Although I am cancer-free, I am not worry-free. I have three beautiful children that could potentially carry this genetic mutation. As a retired nurse, artist, wife, and mother, it has become my mission to spread awareness about this deadly syndrome. More awareness brings more funding, research and better treatment options for everyone affected.
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The grassroots economic support we can provide here has a significant and meaningful impact on the futures of our CDH1 community. As a parent, you can imagine how difficult it is for us knowing we passed this gene on to our children, and we’re doing everything we can to save their stomachs and avoid a cancer diagnosis. We need and ask for your help to fund our initiative.
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