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  MISSION STATEMENT The primary mission of Lynch Syndrome International (LSI) is to serve our global communities by focusing on providing support for individuals afflicted with Lynch syndrome, creating public awareness of the syndrome, educating members of the general public and health care professionals and providing support for Lynch syndrome research endeavors. LSI, an all volunteer organization, is founded and governed by Lynch syndrome survivors, their families, and health care professionals who specialize in Lynch syndrome. If diagnosed early, we believe Lynch syndrome survivors have favorable outcomes which enhance survival, the longevity and quality of life as well as the emotional well-being of the afflicted. With the provisions of knowledge, caring and respect for those living with Lynch syndrome, coupled with a common theme of a prevalent positive attitude, we can be change agents, enhancing hope and survivability, impacting the life of countless thousands of people throughout our world. SCIENTIFIC ADVISORY BOARD Henry T. Lynch, MD Chairman -Founder of Lynch Syndrome, Northshore University Healthcare System, Creighton University Cancer Center, Omaha, Nebraska Albert de Chapelle, MD Ohio State University, Human Cancer Genetics Program, Columbus, Ohio C. Richard Boland, MD -Baylor Center University Medical Center, Dallas, Texas - American Gastroenterological Association Patrick Lynch, MD -University of Texas, MD Anderson Cancer Center, Houston, Texas Jane Green, PhD Memorial University of Newfoundland, St John's, Newfoundland, Canada Dawna Gilchrist, MD -University of Alberta, Alberta, Canada Hans Vasen, MD -Leiden University Medical Center, Leiden, Netherlands and the Netherlands Foundation of the Detection of Hereditary Toumours Stephen Lanspa, MD -Creighton University, Omaha, Nebraska   EXECUTIVE BOARD We are pleased to announce the following Board of Directors of Lynch Syndrome International, for 2013-2014, which represent survivors, previvors, caretakers, medical professionals and researchers of Lynch syndrome.  Lynch Syndrome International Directors are working directors and actively direct and organize events within Lynch Syndrome International.  All indviduals involved with the organization are volunteers and receive no compensation for their benevolence and countless hours of effort. We are very grateful for their contributions to this all volunteer organization. Linda Bruzzone – President/Executive Director  Operations/Fundraising Barbara Fabiani – Vice President Secretary   Operations/Fundraising Dave Wortman – Treasurer     Financial Oversight Susan Olson – Brentwood, California/Survivor  Young Previvors and Survivors Liaison Beth Fairbank – Brisbane, Australia /Previvor    Australia Liaison Todd Neil – Winnepeg, Canada /Previvor   Canada Liaison Wolfram Nolte- Germany /Survivor    European and Germany Liaison Judith Ruggiero –  Vacaville, California /Previvor   Public Policy Liaison John Nelson – Las Vegas, Nevada/Survivor  Native American Tribal Liaison Michelle Miller, LCSW – Denver, Colorado /Survivor Bill Harb, MD – Nashville, Tennessee / Medical Provider  (Liaison With Medical and Research Organizations) Cristi Radford – Sarasota, Florida/Genetic Counselor (Chairs Medical Professional and Patient Education) Carrie Snyder - Omaha, Nebraska/RN-Genetic Counselor (Chairs Medical Curriculum-Research)   WEBSITE SUPPORT David Wakefield, Webmaster   ENDURANCE COORDINATOR Meg Davis – Endurance Coordinator   CONTACT US Lynch Syndrome International 3650 South Pointe Circle  Suite 205-9 Laughlin, Nevada  89029 Telephone: 702-298-3911 Please do not hesitate to contact us with any questions you may have. REGULATORY  INFORMATION On 7/1/2009, Lynch Syndrome International was incorporated as a not for profit organization within the State of California and is registered with the Office of the California Secretary of State. Lynch Syndrome International, Inc. has been granted 501(c)(3) status as a not for profit, tax-exempt charity by the United States Government, Internal Revenue Service. Lynch Syndrome International, Inc. has been granted tax exempt status by the State of California, Franchise Tax Board.  It is also listed, in accordance to California State law with the Office of the California State Attorney General, Charitable Trusts Division and registered with the California State Board of Equalization and California State Franchise Tax Board.   SITE CONTENT This website is developed and maintained by Lynch Syndrome International.  All medical information on this site is supported by recent studies and specific source information is linked to the direct study. The specific section for professionals is reviewed by medical professionals and information is sourced with the specific studies.  Within the section for survivors, the information has been compiled by survivors and, in some cases, in collaboration with experts.  As well, specific information has been sourced.  If question arises regarding information, please contact The website of Lynch Syndrome International is Honcode Verified and reviewed for certification by Honcode for meeting trustworthy health information.   ADVERTISING At this point, Lynch Syndrome International is not offering advertising opportunities upon the website, however, in the future, following Board of Directors approval and development of an ethical advertising policy, advertising may be available and utilized upon this site.   PRIVACY We at LSI respect your privacy.  We do not collect, distribute or display personal identifiable information on visitors to this site. In the absence of a signed waiver, any articles, tips or submissions will be credited to the senders initials only. From time to time, we may have a member of the media requesting an interview with a Lynch syndrome Survivor, Previvor or with a health care professional with expertise in Lynch syndrome. You may be assured your personal identifying information or contact information will not be provided and in that event, we would contact you and upon your agreement to participate, would respond directly to the request. We do not maintain a bulletin board or blog on this site however do have an organizational support and information site on We are not responsible for any content placed upon the Facebook site or have any control over the privacy of the identities and contact information for individuals.   DISCLAIMER The content upon the website of Lynch Syndrome International is for informational purposes only.  It is not intended to replace professional medical opinion or advice. We strongly recommend our readers seek the advice of their physicians or otherwise qualified healthcare professionals with any questions they may have about any condition. It is not the intent of this organization for persons to rely upon information on this site for diagnosis or treatment of any condition.  We strongly recommend our readers seek and utilize the services of an expert, qualified healthcare professional for consideration of any diagnosis or treatment of any condition. We do not endorse any treatments, brands or manufacturers of any materials used for diagnosis or treatment of any condition. Any opinions written upon any of the pages on this site are the opinions of the writers and not those of Lynch Syndrome International.  Reliance upon anything written by any person associated with Lynch Syndrome International and/or within this site is   solely at your own risk. Due to the nature of the cancers inflicted by Lynch syndrome, some subject matter within the site may be graphic and to some, considered offensive.  Access to this material is at your own risk. All matter on this site is subject to United States and international copyright laws.  Copying and/or reproduction of this material is by specific, written permission only.     This site complies with the HONcode standard for trustworthy health information:  verify here.   Search only trustworthy HONcode health websites: Modified:  3/12/2014 - changed LSI address & tel      
Monday, 13 May 2013 | 22092 hits
  The highest honor bestowed by The Ohio State University on its faculty was presented in 2004 to Dr. de la Chapelle, who initiated and built the University's Human Cancer Genetics Program after his arrival in 1997.   A member of the U.S. National Academy of Sciences, Dr. de la Chapelle is a professor in the OSU College of Medicine and Public Health's Department of Molecular Virology, Immunology and Medical Genetics.    He holds the Leonard J. Immke, Jr. and Charlotte L. Immke Chair of Cancer Research.  He also has won the two most prestigious awards in genetics:  the Mauro Baschirotto Award from the European Society of Human Genetics, and the William Allan Award from the American Society of Human Genetics. Dr. de la Chapelle's research focuses on the genetic predisposition to cancer and he had conducted considerable research into Lynch syndrome (HNPCC)  Dr. de la Chapelle was born in Helsinki, Finland on February 11, 1933.  In the 1950's, he served in the Finnish Army and following, began his education which lead to becoming one of the most accomplished and distinguished genetics experts in the world.  During his career, he has been honored for his distinguished accomplishments over thirty times and has been involved with dozens of Advisory Boards involving genetics.  He is one of the most esteemed genetics experts in the world.  We are extremely honored to have Dr. de la Chapelle as a member of our Medical Advisory Board and are very grateful to him for his efforts on behalf of Lynch syndrome survivors, previvors and families. Papers of Dr. De la Chapelle Introductory Speech for Dr. de la Chapelle - 2002
Saturday, 27 February 2010 | 1572 hits
RECOMMENDED SCREENING FOR LYNCH SYNDROME CANCERS Colonoscopy: Annually, beginning at age 20-25, or ten years younger than the earliest age of diagnosis in the family, whichever comes first. NCCN guidelines (NCCN Version 2.2013) state two to five years prior to the earliest age of diagnosis in the family, and to repeat every 1-2 years. NCCN Guidelines reflects: There are data to suggest that aspirin may decrease the risk of colon cancer in LS, however, at this time, the data are not sufficiently robust to make a recommendation for its standard use. For those with MSH-6, NCNN guidelines (NCCN Version 2.2013) state every two to three years beginning at age 30 - 35 and every two years until age 40 and then every one to two years. NCCN does not provide management guidelines for the extracolonic cancers of those with MSH-6. They advise prophylactic hysterectomy and oopherectomy following childbearing years. For those with PMS-2, NCCN guidelines (NCCN Version 2.2013) state colonoscopy to begin at age 35-40 and continue every two to three years until age fifty. At that time, colonoscopy screening should be followed every one to three years. For those with PMS-2, NCCN guidelines do not provide management guidelines for the extracolonic cancers of those with PMS-2, including recommendation for endometrial cancer. Endometrial Sampling: Annually, beginning between ages 30-35 NCCN Guidelines reflect despite no current scientific evidence, annual endometrial samplings may be useful in select patients. (NCCN Version 2/2011) Transvaginal Ultrasound: For Endometrial and Ovarian Cancer: Annually beginning ages 30-35 NCCN guidelines determine this is at the clinician's discretion. CA-125: For Ovarian Cancer. While there may be times screening can be helpful, NCCN has determined data does not support routine ovarian screening for LS. (NCCN Version 2/2011) Ultrasonography With Cytology: Annually, beginning at age 25-35 (NCCN Guidelines, Version 2.2011 refer to an "annual urinalysis.") Gastroscopy: NCCN guidelines have now been revised. "There is no clear evidence to support screening for gastric, duodenal, and small bowel cancer for LS. Selected individuals or families or those of Asian descent may consider EGD with extended duodenoscopy (to distal duodenum or small jejunum.)" Colon Resection: For individuals with active colon cancer that cannot be removed by colonoscopy. Subtotal colectomy favored with preferences of patient actively elicited. The National Comprehensive Cancer Center Guidelines recommend a total abdominal colectomy with ileorectal anastomosis in the event of adenomas not amenable to endoscopic rescection. (NCCN Guidelines Version 2.2013) Hysterectomy and/or Oopherectomy: Discuss as an option after childbearing years to deter the high risk of gynecological cancers. NCCN's revised guidelines have listed this as a guideline for all but those with PMS-2 mutation. Dermatological Examination: For Muir-Torre (lesions of the skin including sebaceous adenomas, sebaceous epitheliomas, basal cell epithelioma with sebaceous differentiation, sebaceous carcinoma and squamous cell cancer (keratoacanthoma type.) NCCN has not addressed Muir Torre. Other tests may be ordered at the discretion of the Clinician to include screenings for pancreatic cancer, CNS cancer, prostate cancer, liver cancer, gallbladder cancer and renal-pelvic cancer. NCCN has added a statement about pancreatic cancer: "Despite data reading an increased risk for pancreatic cancer, no effective screening techniques have been identified, therefore, no screening." NCCN has added the following regarding breast cancer: "There have been suggestions that there has been an increased risk for breast cancer in LS, however due to limited data, no effective screening techniques have been identified, therefore, no recommendation is possible at this time." Updated: 6/22/2013
Monday, 15 February 2010 | 22644 hits

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