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Lynch Syndrome International

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Nonprofit Overview

Causes: Cancer, Cancer Research, Civil Rights, Health

Mission: 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 from Lynch associated cancers. We believe these outcomes 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.

Results: Social Media: Our Facebook site has 1650 fans, of which approximately 70% are either diagnosed with Lynch syndrome, are at high risk for Lynch syndrome, or have been closely involved with a person who has suffered from Lynch syndrome. It boasts approximately 73,000 post views per month from approximately 19 different countries. Our Twitter site boasts approximately 225 followers, of which many are major institutions and foundations. Our website boasts approximately 6,000 visits per month, many of which are international. Our most active page is LSI Library, a comprehensive data site of where to find studies and publications on Lynch syndrome. We receive approximately twenty to twenty five emails per week, requesting information on Lynch syndrome and personal support. We receive approximately fifty telephone calls per week from institutions, medical professionals, individuals recently diagnosed, etc. We have approximately 120 active volunteers in the U.S. and approximately forty outside the U.S. We are involved with approximately eighteen different cancer associations. Governors of twelve U.S. states declared March 26, 2011, Lynch Syndrome Public Awareness Day, in response to public awareness provided their offices. We advocate genetic testing for Lynch syndrome and universal testing for MSI-IHC pathology, a precursor test of tumors to determine if characteristics of Lynch syndrome exists. Testing has dramatically increased as a direct result of public awareness.

Target demographics: Our target demographics are medical professionals and individuals who are at high risk for Lynch syndrome, internationally.

Direct beneficiaries per year: The direct beneficiaries of our endeavors are those individuals at high risk for Lynch syndrome, worldwide--and their families as well as medical professionals.

Geographic areas served: Internationally

Programs: Public Awareness: Relay for Life Teams, Facebook Social Networking, Twitter Social Networking, Website, Flash Mobs, Lynch Syndrome Community days at regional institutions, Governors Campaign for Lynch Syndrome Public Awareness Day, Faith Based Public Awareness Campaign, Association Public Awareness Campaign, Mass Media Public Awareness Campaign Education: Exhibiting at Conferences, Speaking at CME Classes, Preparing videos for medical schools, Professional pages upon our website Support: Online support via email; telephone support via phone, personal support from other survivors, extensive resource pages on website, website, promotion of Lynch syndrome Survival days at various institutions, provision of information on resources for genetic discrimination. Government: Providing input from a patient perspective, on Lynch syndrome; advocacy for funding for Lynch syndrome related projects; minimal lobbying for Lynch syndrome related legislation, provision of input regarding Lynch syndrome. Institutions: Clinical Trials information and recruitment for Lynch syndrome related clinical trials, provision of Lynch Syndrome International published materials. Assistance with facilitating Lynch syndrome survivor days.

Community Stories

19 Stories from Volunteers, Donors & Supporters

Robert118

General Member of the Public

Rating: 5

After having Stage 1 colon cancer at age 25 then again at age 46 and two colon resections my oncologist recommended I undergo genetic testing. I have Lynch Syndrome. This is something I have never heard of before so I desperately wanted to find out more information. Lynch Syndrome International is the first organization I found and the information available from them has been very helpful to me. Thank you LSI for what you do for us who have this disorder!

Volunteer

Rating: 5

My name is Benjamin, and at the age of 21, I was diagnosed with stage 3 colon cancer. As most people know, the average age for colon cancer is after 50, but the doctors estimated that it had been working inside me since I was 19. The reason I acquired cancer at such a young age is due to the fact that I was born with Lynch Syndrome, an incurable genetic condition which greatly increases my risk of getting colon cancer and other cancers.

Prior to being diagnosed, I had never even heard of Lynch Syndrome. I didn't know that my dad had it, that my grandma (who died of cancer young) had it, that my cousin (who died of cancer young), and that my two younger brothers also have it. If I had known about my having Lynch Syndrome, then I could have had cancer screenings which would have caught the cancer early. My cousin who did a few years ago might have survived, had she known. This is why Lynch Syndrome International is such an important foundation. They seek to raise the awareness of Lynch Syndrome by educating both doctors and families about Lynch Syndrome, and what steps someone with Lynch Syndrome must do in order to catch cancers early.

LSI runs a great and informative website and Facebook page, which share plenty of great information for those who are dealing with Lynch Syndrome. They also have passionate volunteers who will help people dealing with LS.

I really appreciate what they do.

Katie90

Client Served

Rating: 5

After becoming frustrated at my primary doctor who diagnosed me with Lynch Syndrome I started to do my own research and came across Lynch Syndrome International's website. I looked through many of the different pages within the site (very easy to navigate) I found I still had some other questions. So I called, Linda was an amazing wealth of knowledge and was able to direct me to a "Lynch Syndrome Expert" in the state of NC where I live. It just so happens this expert is located at my local hospital. Because of this site and Linda having the resources within 2 weeks of my first contact with her I had my first appointment with this amazing doctor. I now have a game plan to start (it may change one all my initial screenings are done) but I feel positive in the directions things are going. Without LSI I would still be waiting 6-9 months to see a genetic counselor (not sure why, I am already diagnosed) and waiting on a phone call back from my primary doctor's office to schedule a colonoscopy. I have found that the study's my doctor mentioned LSI has already posted and are helping me understand things more. The support and information provided are amazing!

1

General Member of the Public

Rating: 5

My Mom died of stomach and pancreas cancer at 57. My Dad died of Kidney and Bladder cancer at 68 and my Sister was 52 when she died of endometrial cancer in 2008. When I was 50 a first and routine colonoscopy showed that I had a tumor in my colon. I had surgery to remove it and was lucky it was found early and did not have to go through any additional treatment. A few months prior to my Sisters death my Wife and I accompanied her and her Husband to the M.D. Anderson Cancer Center in Houston, Texas for her to counsel with the Doctors there about her struggle with cancer. During those discussions in Houston the Doctors, upon learning of my colorectal cancer, suggested we find a Genetic Counselor when we got home and go through genetic testing. Not only to protect us in the future but to determine if these cancers were hereditary and we needed to be aware of what might lie in wait for our children. When we returned from Houston my Sister was too sick and mostly confined to the Hospital so we did not schedule the genetic testing. But after her death I did see a Genetic Counselor where I outlined, as best I could remember, the entire medical history of my Dad and Mom sides of the family. As I described my families cancer history to her she took many notes and drew charts and graphs then told me at the end she suspected I had Lynch Syndrome and it was more that likely passed to me from my Dad. I had blood drawn that day to be sent off to an out of state lab for testing and it came back positive for Lynch Syndrome. I sat down with her again in her office to discuss Lynch Syndrome and came away with a game plan of annual colonoscopies and bi-annual endoscopies to make sure another colorectal or a new abdominal cancer does not sneak up on me again. She also strongly suggested that I have my two sons, age 28 and 25, tested and that I encourage my Sisters Husband to discuss Lynch Syndrome with his two children, one boy 28 and one girl 24 and have them tested. We eventually got all of them tested and only one, the only female child, tested positive to Lynch Syndrome. Which confirms that my Sister was also Lynch Syndrome positive. So, at 24 years old and recently married my niece finds out she has Lynch Syndrome. The first thing that was suggested for her to do was to have a colonoscopy which she did and a colorectal cancer was found. After conferring with a Doctor who is most familiar with Lynch Syndrome and the Colorectal Surgeon who did her colonoscopy it was decided she needed to have her colon removed as a precaution against further colon related cancer. That surgery was performed and, as I understand, her small intestines were extended and attached to her rectum and she now lives a very normal life. She is however encouraged to begin having children so that she can have a hysterectomy, after her last child is born, as another proactive precaution again Lynch Syndrome attach against her female organs. I have just recently become a patient of the Lynch Syndrome Specialist I spoke about above and he has put me on a strict program of annual colonoscopies, every 12 months no stretching it out. Cat Scans every five years, we just did one to establish base lines, and rigid urinalysis. A small polyp was found and removed during my recent colonoscopy and he has cautioned me that the more I have will probably lead to another surgery which may be to remove my colon. I am in West Metro Atlanta, Ga. If anyone would like to have the name of the Lynch Syndrome Specialist Doctor I and my niece see you may e-mail me at jbmann52@gmail.com and I will be happy to send you his name. He is a very good Doctor and knows Lynch Syndrome

Client Served

Rating: 5

I was diagnosed with Lynch Syndrome after going to a new gynecologist for my annual exam. He had me fill out a family history and immediately suggested genetic testing for Lynch Syndrome, as I am an endometrial cancer survivor, my father survived colon cancer in his 40's and his brother died from colon cancer in his 40's. I was devastated by the news and had nowhere to turn. I started researching Lynch Syndrome on the internet and LSI came up. I called the telephone number listed on their website because I was in a complete panic. Linda called me within an hour, and spent a half hour on the phone with me, giving me information and calming my fears. I can never explain how much that call did for me, and how Linda and LSI have been helping me ever since. I look for their Facebook posts every night. They are amazing!!

1 Jennifer190

General Member of the Public

Rating: 5

Lynch Syndrome International is helping to bring awareness and support to those of us who are genetically modified. So little is known about all the implications that this Syndrome can bring and by sharing research and life histories we are helping each other, it gives us the knowledge we need in many cases to go out and educate our health care professionals, something we shouldn't really have to do - but in many cases is a necessity. It's not just about helping to safeguarding those of us on the site now, it's the generations to come.

1 Debbie68

General Member of the Public

Rating: 5

Just got my results back which to me were a no kidding, yep, it's Lynch Syndrome. My mom, 3 of her brothers, me and 2 of my brothers have had colon cancer. It doesn't stop there, I've had intrauterine cancer, brother, also had renal and bladder cancer, sister with ovarian cancer, another sister with anal cancer. I have anal dysplasia, which the doctors will not pro-actively treat......oh my, they're just warts!!! REALLY??? When my sister just had anal cancer and my anal warts are exactly the same??? Definition of anal dysplasia....abnormal cells that typically turn into cancer.Unfortunately, after badgering my doctor into throwing up his hands and admitting I don't know, he did admit that there hasn't been much testing on anal cancer because most cases are aids related. One of my children has been tested and does in fact have lynch syndrome. She has had her children and plans to pro-actively treat this by having a complete hysterectomy.

1 Bones S.

Volunteer

Rating: 5

Found LSI after Lynch diagnosis in Mar 2012, I was devastated but their site was so informative and supportive. I found important med info and a knowledgable, educated group to help me find the right doctors and appropiate surveillance. Which is KEY to surviving Lynch Syndrome. Thank You.

1 Jeannie L.

Client Served

Rating: 5

You can't even imagine the wealth of information I have access to from this organization. Having been diagnosed with Lynch years ago, it was difficult to keep up to date on the recommendations for surveillance. LSI not only provides the most up to date info, but raises awareness AND encourages others to help raise awareness as well.

2 Beth48

Board Member

Rating: 5

When I first heard of Lynch Syndrome, I searched everywhere for information and it was limited. I came across Lynch Syndrome International (LSI) on Facebook and that also led me to their website. After years of not knowing, after losing 3 siblings and my dad to cancer, we were formally diagnosed this year. LSI, all their information and support, certainly helped us to get to this point. The rest of my family, my children, and the generations to come are the lucky ones...we have knowledge!! It's wonderful being a part of LSI, educating and bringing awareness!

2

Client Served

Rating: 5

My mother died from breast cancer 12 years ago. Her Dad and both of her sisters had died from cancer years before. (He had colon cancer.) I have 2 sisters and we were familiar with the prediction that one out of three daughters of a woman with breast cancer will also get breast cancer. So it was in the back of my mind my odds of gettng breast cancer. So I was faithful about having my yearly routine annual gynecologist visits including paps and mammograms. In Feb of 2011, I was age 54 and had my annual physical. Shortly thereafter my Dr's office called and told me results of the Pap were abnormal. After an ultrasound and D&C, I learned i had endometrial cancer. I had the davinci laproscopic surgery hysterectomy done by a GYN oncologist and recovered nicely. I turned 55 in May and scheduled my 2nd routine colonoscopy (My first one was done as recommended at age 50.) The GI dr told me immediately after recovery that he thought i would need more surgery as he found growths. The pathology report came back cancer. Then I was referred to a surgeon for the colon cancer surgery. That was done as a traditional abdominal surgery, but I again recovered nicely. I asked my surgeon about 3 weeks post surgery if the 2 cancers could be connected. He said NO, it was just bad luck. The next month I went to my GYN ONC for a routine followup exam. I told him about the colon cancer and asked him the same question: Could my 2 cancers be connected somehow? He said lets do genetic testing. He had the tissue sample from my colon cancer surgery tested , and it showed one protein missing on the PMS2 gene, consistent with lynch Syndrome.This was in November. I began researching Lynch online. I told my surgeon about my diagnosis and he had never heard of Lynch tho he does colon cancer surgeries every week. I told my Primary care physician about my diagnois, and not being familiar with it, he looked it up on his computer during our talk, and he exclaimed There's even a diagnostic code for it! So, while i love my Drs, I quickly realized they were not able to guide and help me manage the Lynch. I had only been told to have a blood draw every 3 months and a colonoscopy every year. I found the LSI website and started learning so much. One day early in 2012 i decided to call. Linda Buzzone answered and she talked with me over an hour! She gave me recommendations on Drs that were experts in the field. Plus recommendations as to screening tests i needed since I was high risk for several other types of cancers. I immediately began scheduling all the recommended screenings. Thankfully, they all came back normal. I had other communication with Linda Bruzzone at LSI ,by both email and phone . I then had a consultation in July 2012 with Dr Linda Farcus at Duke, whom Linda had recommended. She gave me all the same screening recommendations that Linda from LSI had given me. She just added 2 asprin daily. LSI's help was invaluable to me! With the information i learned from Linda Bruzzone, I now feel confident about how to manage my Lynch and am committed to faithfully getting all recommended screenings. Thank you LSI for being there to guide me through it.

2 Dave27

General Member of the Public

Rating: 5

Lynch Syndrome is now widely discussed in our family after finding out last year that many of us are affected by this problem. Where did we turn to? LSI International ! Not only does the website provide much needed information but the LSI staff are also outstanding! I contacted LSI about helping me put together information needed to speak to a local civic club. They not only sent me materials to hand out to the group but provided me a first class powerpoint presentation to use. It was of tremendous value. I have another speaking engagement lined up for next month. I feel that it is important, as does LSI, that we educate as many as possible about this problem. Had we known about this years ago, my sister who passed away in 2009 at the age 54 from stomach cancer, would still be with us. Help support LSI in any way you can as there really is not another organization out there for those of us with Lynch Syndrome to call upon.

2 Eileen G.

Volunteer

Rating: 5

LSI, Lynch Syndrome International is doing an amazing job supporting families with genetic cancers. They have on online support community that reaches out and helps people with new diagnosis find the resources and support they need to survive. They are also fighting for legislation to make it possible for families with genetic syndromes to be tested so that they can prevent these cancers rather than battle them. They are raising awareness so that families with multiple incidences of cancer will be aware that genetics may be a major factor, and therefore testing can make early detection possible to save young lives. Everyone in the organization is a volunteer. No one is being paid to do the work. This is a very necessary, and highly supportive organization, and yes, I am a Lynch Syndrome patient from a family with many cancer deaths. LSI has been an incredible support for me.

1

Volunteer

Rating: 5

I found I had Lynch Syndrome shortly after I was diagnosed with Stage 3 cancer of the ureter. Lynch is a dominant gene situation, so my three kids each had a 50/50 chance of having the syndrome. One was negative, and two positive. After receiving the positive test result, my 27 year old daughter scheduled a colonoscopy. They found colon cancer early enough so that surgery was all that was needed. When the "normal" starting age for screening for colon cancer is age 50, what are the chances that anyone would have looked for it in a 27 year old? LSI is an organization with only one goal: spread awareness of hereditary cancers. It is a volunteer organization, and spends all contributions on educating the public on the dangers of Lynch Syndrome and other hereditary cancers. There are no paid employees, just individuals committed to saving lives, spreading the word in their communities.

1 Debbie45

General Member of the Public

Rating: 5

I tested positive for LS after a blockage sent me to the ER and an subsequent diagnosis of stage 2A colon cancer. I am very fortunate it did not spread and was caught in the nick of time, but I know more attention needs to be paid to hereditary cancers and here's why. My brother was diagnosed with colon cancer in 1999, so my doctors were aware and I was supposedly being watched carefully, but still my tumor was allowed to grow to 8cm! I also had had ovarian cancer in 2007 and despite this, genetic testing was not performed until after my colon cancer surgery. I now believe I should have been tested prior to surgery, since they already suspected it and unfortunately did not have the optimal amount of colon removed. After testing positive for LS I contacted Lynch Syndrome International and got invaluable advice for follow-up treatment and testing of my siblings and children. I am extremely grateful for this resource!

1 Joe C.

Donor

Rating: 5

Earlier this year my sister was diagnosed with Colorectal Cancer. After genetic testing it was discovered that she carries the gene mutation known as Lynch Syndrome. My entire family then underwent testing after-which it was revealed that my mother and I also carry this gene mutation.

After attending a series of family counseling I continued my own research on the subject of Lynch Syndrome and discovered Lynch Syndrome International's Facebook page. After liking their page, I found their constant stream of information very useful, helpful, and inspiring. Enough so that I recently held a fund raiser for them, which they were more than helpful in providing literature for.

I personal thank LSI for their constant efforts in educating the community and support to those suffering from LSI.

2 Yen T.

Professional with expertise in this field

Rating: 5

I'm a PhD student in Australia researching on patterns and barriers of referral of Lynch patients to Cancer Genetic Services. My research involves a retrospective audit, interviews and a national survey. I remember I stumbled upon the LSI website in Facebook on one of my not-so-productive days. I got really excited and told my colleagues about it (but I don't think they're as excited as I was since all of them are not Lynch researchers). I'm really glad to know that there's support for Lynch patients out there and also for the medical/research community. As a young researcher, it is great to know that there is the external support available and is within reach. It makes me realize that I'm not alone, and that gives me the drive to keep going in my research even at trying times. I can't wait for the day when I get to attend and present my research findings to everyone.

2

Volunteer

Rating: 5

I am someone who was diagnosed with Lynch Syndrome about 2 years ago. This testing and result came because my sister and I started piecing our families cancer history together. We saw many similarities in the types of cancers and the ages of the family members when they were diagnosed. We decided to create this family cancer tree and show it to our doctors. My sister already had 2 of the Lynch cancers at this time. We both had genetic testing done and found that we had this same gene mutation (MSH2) and have Lynch Syndrome. Shortly after my diagnosis, I was diagnosed with Endometrial cancer at 41 years old. I went through the surgery and recovered well. My sister and I had so many questions about Lynch and nobody to talk to because nobody we knew had ever heard of it. We did google search and found Lynch Syndrome International. What a fantastic resource for people like ourselves. We have so many questions to be answered and with the help of LSI, many, many questions have been answered. They offer daily updates to your email as well as access to their website through Facebook. We love LSI!!

2

General Member of the Public

Rating: 5

Wow!!! What a great charity - 100% of funds go to supporting a super cause - all efforts are volunteer - wow !!!

Letting the public know about ****Lynch Syndrome**** saves lives and improves the quality of life for millions of people.

It helps educate everyone including the medical community on this genetic predisposition to many cancers.

It also pulls families together in this effort thru education.

Your ****gift**** will have an amazing and positive impact on your fellow beings.

Much cheers, Jim