Lynch Syndrome International

Our goals, aside from maintaining our current mission and ongoing projects are:

1. Develop an international registry of those with the Lynch syndrome for private and public research institutions to recruit from within their clinical studies and research projects;
2. Host the first International Living With Lynch Syndrome Day, in Orlando, Florida, on June 21, 2014, to benefit approximately 300 families and hundreds of medical professionals;
3. Encourage the US Preventative Task Force to recognize Lynch syndrome prevention for those with LS hereditary cancers, as equally as it has for those with BRCA 1/2 mutations
4. Encourage public institutions to recognize and provide equal services, education and awareness to those with the Lynch syndrome, equal to that given to those with the BRCA 1/2 hereditary breast cancer;
5. Help increase genetic testing through full sequence testing, so more families will be protected from the Lynch syndrome and there will be less "sacrificial lambs" required, who will be forced to contract a life threatening cancer, before a family may be diagnosed;
6. Develop and implement programs for education, public awareness and genetic testing for the underserved.
7. Encourage the federal government insurances to provide risk assessment and genetic testing to those who are at high risk for the Lynch syndrome.

LSI is developing coalitions and committees of volunteers to work toward these goals. By assessing the strengths and weaknesses, as well as experiences of our volunteers, we now have a base large enough where we can match them with others, and assign them to specific projects.

An excellent example of this is in New England. We have individuals with experience in fundraising, who are pulling together local volunteers and planning a major public awareness/fundraising event.

We have developed and expanded a coalition of individuals to work on our Southwest Public Awareness and Education Project.

We are working on the development of Lynch syndrome medical professionals to work on the development of a registry.

We have developed, through our Board of Directors, a team of individuals who are engaged in the planning and hosting of our First International Living With Lynch Syndrome Day, in Orlando, Florida, on June 21, 2013.

Our Board of Directors have been chosen because of their particular expertise. It is a working Board of Directors comprised of social workers, educators, genetics professionals, public relations, nonprofit background, medical professionals, software, computer security and internet professionals, financial professionals, survivors, previvors. It is a balance of male and female, old and young, and diversity.

With this expertise, combined with the expertise within our 4,000 families of volunteers, and coupled with our culture of volunteerism, we are able to do more, with far less than most nonprofit organizations. We work harder! :)

Every program we have planned and initiated, we have accomplished, to date. We are of the strong belief, with passion, positive manpower and a commitment for success, our programs will be successful. We don't set ourselves up for failure by engaging in unrealistic objectives. We set ourselves up for success.