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Lynch Syndrome Hereditary Cancer Public Awareness Day -- A Great Success

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March was a terrific month for Lynch syndrome public awareness.




At the request of individual state Lynch Syndrome International Task Force Leaders and hundreds of volunteers, thirty six Governors, nationwide, signed proclamations declaring March 22, 2013  Lynch Syndrome Hereditary Cancer Public Awareness Day, in their states.  Additionally, two Governors submitted letters of support. 

In this effort, LSI worked with many different organizations and institutions throughout the U.S.  We are so very grateful to the genetic counselors, the instititutions, the companies and our dozens and dozens of  volunteers whose efforts  will result in saving thousands of lives by participating in this one day.

Events and activities included:

Nick Seferin of CBS News - London, wrote a terrific news article about Lynch syndrome and the agonizing choice of prophylactic colectomy which reached millions.  The History of Bowel Cancer Clinic in Middlesex, England was extremely active in promoting public awareness there.

A paper was published by Jurgen Seppen of  Vereniging HNPCC-Lynch in the Netherlands and Linda Bruzzone of Lynch Syndrome International addressing the perspective of the patients.  Awareness efforts to educate physicians was performed by Lynch Syndrome Australia and with the announcement of the newly formed Lynch Syndrome organization formed in Spain, AFAL Spain.

Various hospitals and organizations held Lynch Syndrome Days in their communities, including a collaborative effort with the Michigan State Public Health Department Kalamazoo, Michigan and local institutions, Lynch Syndrome educational days for patients and medical providers at  the University of Washington, Seattle, University of Texas, SW, Sloan Kettering, Fox Chase and various public awareness campaigns occurred at local hospitals and medical facilities including the Akron Childrens Hospital, Theda Clark Health Services in Appleton, Wisconsin, numerous clinics in Florida, Texas, Wisconsin, Michigan, Arizona and many more across the United States.  To them, we are so very grateful and have already received telephone calls and emails from those pending diagnosis, following their efforts.

Approximately 15,000 radio spots were played nationwide and, new this year, were billboards in Georgia, California and Kansas and teams of runners participated with the Colon Cancer Alliance with their Undy500 races. 

LSI exhibited at NCCN in Hollywood, Florida.  It was a wonderful experience to see physicians actively involved in Lynch syndrome and approaching the table, ready to engage in learning more about it.  The nurses were terrific and passionate about performing risk assessment, following a training session from Heather Hampel.  They will make an incredible difference in the level of diagnosis.

Approximately 135 communities were actively involved this year through grassroots efforts of our volunteers and approximately 27,000 brochures, wristbands, tattoos were distributed, nationwide.  Dozens of volunteers were involved in local media newspaper and television articles. 

We met with the staff of a few Congressional members who agreed to work with LSI in assisting in recognizing the preventative measures with genetic testing and annual screenings and the need to eliminate co-pays for ongoing medical screenings and genetic testing, as well as offer genetic testing services for those individuals unaffected by cancers and who are covered by Medicaid, Tricare and Medicare.

The month ended with our Canadian representative who announced Manitoba will soon be performing genetic testing.

Finally, we interracted with many who are newly diagnosed with Lynch syndrome or those who were in need of assistance with genetic testing and annual screenings.  The need is getting greater every day and the numbers contacting us have doubled during the past six months.  Approximately fifty percent of the workweek is now spent providing support for our families and the other fifty percent with outreach efforts.  We are rapidly expanding and that is a good thing!

A short rest and then we're on to Relay for Life outreach efforts within our local communities.  We are beginning to send out packages including posters, tattoos and wristbands for Relay for Life events.  Be sure and request yours This e-mail address is being protected from spambots. You need JavaScript enabled to view it .  As always, there is no cost!


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