The Mission

The mission of I Have Lynch Syndrome, Inc., is to save lives through education and raising awareness about Lynch among the global medical community and the general public. Ihavelynchsyndrome,inc. is a registered charitable organization in Illinois and tax-exempt under Internal Revenue Code Section 501(c)(3).

The Vision 

Lynch syndrome is a syndrome of autosomal dominant inheritance, which predisposes one to one or more of a dozen of early onset (<50 years of age) cancers. It is estimated that there are 600k – 1 million Lynch carriers in the U.S. but currently only about 5% of them know they are carriers; many opportunistic cancers that affect this group are at rates far above the national statistical average.

  • Physicians, specifically general practitioners, gynecologists, and gastroenterologists will be targeted as they are at the forefront of the fight of Lynch syndrome; early onset cancers, especially of the colon, uterus, and endometrium in a family’s medical history should be cause for concern.
  • Genetic counseling and genetic testing are crucial in the fight against and the understanding of Lynch syndrome and are both highly recommended for families who may be afflicted with this syndrome.
  • To continue assisting and empowering those who reach out for emotional support, information and resources.

The Goals

  • Giving Lynch syndrome individuals hope.
  • To decrease despair.
  • To emphasize the need for medical practitioners to watch for family histories in particular, of early-onset colon cancer.
  • To encourage dialogue between health professionals and their patients on the psychological effects of a positive diagnosis, and prophylactic surgery for women.
  • To emphasize that qualified certified genetic counselors need to be consulted.
  • The importance of genetic testing.
  • To link research and resources internationally.
  • To provide information on the benefits of positive lifestyle changes.
  • The greatest goal is to increase Lynch syndrome awareness amongst the global medical community – especially now since colon cancer is becoming more prevalent worldwide in people under the age of 50.

The Objectives

  • To continue to provide support to those with Lynch syndrome by providing them information and resources which they may require.
  • A strong presence on social media regarding current news, blog posts, clinical trials, etc. for Lynch syndrome and other hereditary cancer syndromes.
  • Writing for various international medical publications, esteemed websites, and other blogs.
  • To hold frequent Tweet Chats with Ellen Matloff and Amy Byer Shainman under #GenCSM to raise awareness for Lynch syndrome and other hereditary cancer syndromes.
  • Attending and speaking at conferences and events around the world.
  • Global interviews for radio, podcasts, and television.

For more information regarding advocacy efforts, please see the Advocacy page: http://www.ihavelynchsyndrome.org/advocacy/

Honorary Chairman 

Henry T. Lynch, MD

Board of Directors

Georgia M. Hurst, MA

Founder of ihavelynchsyndrome.org. Lynch syndrome previvor and advocate for those with hereditary cancer syndromes.

Patrick Lynch, MD

Professor, Department of Gastroenterology, Division of Internal Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX

Ellen Matloff MS, CGC

President and CEO of My Gene Counsel.

Assistant Clinical Professor.

Department of Medical Sciences

Quinnipiac University, Frank H. Netter MD School of Medicine.

Candace Henley

Lynch syndrome carrier, colon cancer survivor and advocate, and Founder of “Blue Hat, Bow Tie Sunday.” Advocate on behalf of cancer patients and research, public speaker about colon cancer, survivorship, and education.

Alan Blassberg

BRCA previvor and advocate. Owner at First Prize Productions. Producer of Pink & Blue.

Amy Byer Shainman

The BRCA Responder, Hereditary cancer/BRCA health advocate. Executive producer of Pink & Blue.

John Hurst

Secretary and treasurer

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Chicago Genetics Consultants
Chicago Genetics Consultants