My name is Jon Grossman, and I want to thank you for all that you have done for me, my family, and my fellow CDH1 mutation carriers. In 2016, we found out that a CDH1 mutation runs in our family. Now, 4 of us have had total gastrectomies and are doing great.
I published a website to tell my family’s story (www.cdh1gene.com). It’s a mix of my personal experience and what the published research/medical papers say. I am also working on a website for making and sharing recipes. Users can make recipes and the application calculates a food label. Plus, one of the features is to search for recipes posted by people without a stomach. https://www.recipefoodclub.com