A Patient's Guide to Lynch Syndrome
Development of this guide was made possible through an unrestricted grant from Myriad Genetics Laboratories, Inc.
We are extremely excited to offer 'A Patient's Guide to Lynch Syndrome.' This guide has been a long time in the making. When I was sick back in 2011, before we started the Foundation, I spent a lot of time looking for family-friendly information for FAP. All I found was language that seemed to be written by medical professionals for medical professionals. Just because these syndromes are complex does not mean that the information for families has to be!
My inspiration for writing this guide was my father who was extremely intelligent but never graduated from high school. My hope is that anyone with Lynch syndrome will find the information in this guide accessible, even those who speak english as a second language. In the end, we should all be able to use this guide as a starting point for conversations with children, siblings, parents, and medical professionals.
I was honored to work with the US's top Lynch syndrome experts and patient advocates on this guide. Our contributing medical professionals include Rick Boland, MD, Heather Hampel, MS, CGC, and Karen Lu, MD. Our contributing patient advocates include Dave Dubin (Alive and Kickn) and Sharon Perlman (CCARE Lynch Syndrome), as well as Reagan Barnett, PhD, who cusps both communities (Alive and Kickn and the University of Texas MD Anderson Cancer Clinic.) The end result is a resource that is written by patients for patients, and verified by some of the nation's top experts in Lynch syndrome.
In order for us to better serve you, it's important that we know who is utilizing this resource. Please take a moment to complete the registration form below and you will receive an email to download the guide.
- Travis H. Bray, PhD, Previvor, Founder and Executive Director