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Lynch Syndrome International

Rating: 5 stars   19 reviews 1,781

Nonprofit Issues:

Civil Rights, Health, Cancer

Address:

P.O. Box 5456 Vacaville CA 95688 USA

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.

2012 Top-Rated Nonprofit
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More Info

707-689-5089
www.lynchcancers.com

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Reviews for Lynch Syndrome International

profile
Role: General Member of the Public
Rating: 5 stars  

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!

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

 
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Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

Hope it grows, so that it can reach more people with this message of awareness

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

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!

If I had to make changes to this organization, I would...

Allow for it to continue to grow and expand to reach more people across the world.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

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

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2011

 
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Rating: 5 stars  

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!!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

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.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

 
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profile
Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

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.

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Some

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

1 person found this review helpful

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

1 person found this review helpful

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.

I've personally experienced the results of this organization in...

helping keep my family healthy. The information they provide I then pass along to my doctors thus raising awareness of Lynch Syndromw.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

How did you find this group?

Their name was given to me by the National Cancer Institute while I was searching for answers to my many questions.

 
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Rating: 5 stars  

2 people found this review helpful

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!

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

 
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