PETITION THE WHITE HOUSE TO PROCLAIM MARCH 22ND NATIONAL LYNCH SYNDROME HEREDITARY CANCER PUBLIC AWARENESS DAY!
The White House has invited the public to petition them with issues the people feel important. We need 100,000 signatures affixed upon this petition encouraging the President and the White House to sign a proclamation declaring March 22, 2013 Lynch Syndrome Public Awareness Day in the United States. We have 25 days to get it done. Each of us needs to get 50 persons to sign the attach petition. We believe it will help get research for a gene therapy...and funding for care...put on FACEBOOK sites, blogs, everywhere! This is an opportunity we can't afford to miss. Click here to sign!
LSI ASSISTS WITH CLINICAL STUDY
Lynch Syndrome International is assisting Kristen Dilzell of the Stanford University's Genetics Program. Information regarding the study and links to participate are below. We strongly encourage everyone to participate.
Dear Lynch Syndrome International Member and Relatives,
You are being invited to participate in a study that is investigating how family members use educational materials to communicate about Lynch syndrome/ hereditary non-polyposis colon cancer (HNPCC). Participants in this study will complete an online survey that will ask a series of questions regarding what materials people gave to their relatives to help explain the diagnosis of Lynch syndrome. We hope that this survey will help educators and health professionals create and distribute the most useful materials for families with Lynch syndrome in the future.
This study will be surveying both individuals who were the first in their family to be diagnosed with a Lynch syndrome mutation and their blood relatives.
Your participation in this study is completely voluntary and anonymous, and you may stop at any time. Participants must opt-in to the study. Should you choose to participate, you will take an online survey that will take approximately 20 minutes to complete. No identifying information will be collected in this survey.
If you are interested in completing our survey and you were the first individual in your family diagnosed with a Lynch syndrome mutation, please go to the following site: https://stanforduniversity.qualtrics.com/SE/?SID=SV_eyuhejpBGFCZjGR
If you are interested in completing our survey and one of your blood relatives was the first person in your family diagnosed with a Lynch syndrome mutation, please go to the following site: https://stanforduniversity.qualtrics.com/SE/?SID=SV_5j6IvU3XELxF6Dj
People who have chosen to pursue further evaluation for Lynch syndrome and people who have not had further evaluation are all eligible to participate.
We also encourage you to tell your family members who are/were at risk of carrying a Lynch syndrome mutation about our study and to complete our survey. Recruiting your relatives is not a requirement for this study. However, we are looking to survey as many family members as possible, both those who have chosen to pursue further evaluation for Lynch syndrome and those who have not. If interested, kindly pass along this information to your relatives who are/were at risk of carrying a Lynch syndrome mutation.
All participants are eligible to be entered into a prize drawing for one prize of a $50 Amazon gift card. The prize drawing will take place on March 1, 2013 and will be conducted by Kristen Dilzell. No participation is necessary to enter or win a prize and participation does not increase your chances of winning. The winners of this prize drawing will be informed via the email address (or, alternatively, phone number) in contact information provided. To enter the prize drawing, please visit the following site to enter your contact information: https://stanforduniversity.qualtrics.com/SE/?SID=SV_bJZwe0mi0k6UWsR
Your contact information will be in no way linked to your survey response.
Thank you for your consideration.
Kristen Dilzell, BS
Stanford University, Department of Human Genetics and Genetic Counseling
~LSI ATTENDS OMED 2012~
With much gratitude to the Doctors of Osteopathic Medicine, their national organization, AOA and Ann Fassano of Ann Fassano, Inc., for granting Lynch Syndrome International the opportunity to share information about Lynch syndrome with over 5,000 of their physicians.
For advocacy organizations, exhibiting is almost dreaded and is extremely difficult. There is nothing more painful for us, than when those who are entrusted with the responsibility of care for us and in whom we place not only our lives, but the lives of those who we love, don't even bother to look at us as they pass us in the aisles of medical conferences or when asked if we can speak with them, to wave us away from them. It is heartbreaking and devastating as many of us continue to finance LSI and bring about public awareness to protect families and save lives...
The Doctors of Osteopathic Medicine restored our faith in medical providers last week and the response was absolutely, wonderfully incredible...
Two years ago, we attended their annual conference and personally spoke with over two thousand dollars. At that time, approximately half ignored us and we actively solicited most of the other half. None had ever had a patient with Lynch syndrome, very few had heard of Lynch syndrome and about half a dozen of those with whom we had spoken, knew how to diagnose and manage it.
This year, we spoke with over 1300 physicians and medical students, most of whom approached us...the physicians telling us of their recent diagnoses of patients with Lynch syndrome or asking about it--and the medical students advising how they had learned about it in medical school the past year or two and were anxious to begin diagnosing it.
The students are energized! One in every five medical students in the United States are attending Osteopathic Medical Schools. It was suggested we work with their association in concert of acheiving public awareness together...and we are exploring a way this can be facilitated.
One hospital invited our experts to go on "Grand Rounds" and teach all their physicians about Lynch syndrome and a medical school approached us and advised they would like to be involved in projects involving Lynch syndrome. A trade journal is considering writing an article on the cost saving effects of genetic testing and universal testing of tumors.
All were engaged and excited about the possiblities of very long term relationships with patients. All were concerned. Perhaps working with and engaging the DO's is the secret to breaking the barriers of diagnosis of Lynch syndrome. It certainly reinforced that our efforts of public awareness are making a huge difference...and they are welcomed by the gatekeepers who are responsible for diagnosing us and making referrals to specialists for annual cancer screenings.
For these three days we are so very grateful...1300 more physicians now know about Lynch syndrome and are equipped to help protect families and save lives. Many have reinforced that they are identifying patients through genetic testing and managing them. We found hope in San Diego, at that conference...
Warmth, compassion and true concern was what we desperately needed to see and experience from those in a position of trust...the D.O.s did not let us down!
Celebrate National Previvors Day on September 26, 2012! Have a party! Invite everyone. Embrace life! Take your doctors brownies, bake a cake, distribute brochures about LS! Host a fundraising event for LSI! Tell your story to newspapers, magazines, radio talk show hosts! Celebrate! Pay It Forward...help others protect themselves their families and save lives!
and we will send you a free package of informational brochures to distribute to medical professionals in your local area, to friends and others and some other "goodies," to celebrate this day!
A great way to celebrate is to contact Kasey's Creations of Mexia, Texas and order our LSI t-shirts for yourselves and your family or sell them to raise money for LSI! Every t-shirt order provides LSI with the funding for approximately 20 brochures, 6 wristlets, 40 tattoos. Five (5) t-shirts provides LSI with the funding for 200 brochures, 30 wristlets, over a hundred LSI tattoos!
Kasey's Creations of Mexia, Texas is now marketing Lynch Syndrome International gear at reasonable prices! Order your t-shirts, hats and banners now and a portion of the proceeds will be donated to LSI. If there is something special you desire, like a hoodie or a polo, or a shirt of a specific color, be sure and ask...Kasey loves doing speciality items! Want the logo all the way across the front, just ask! Get your orders in now for Lynch Syndrome Hereditary Cancers Public Awareness Day and Relay for Life!
NEWSFLASH!!! Thirty five (35) of the forty six (46) or 71% of the United States Governors requested to sign proclamations to declare Lynch Syndrome Hereditary Cancer Public Awareness Day have done so to create public awareness in their state! These states include:
The State of Montana, which does not issue proclamations, sent a letter of commendation, acknowledging the day and Lynch syndrome.
LAST YEAR'S LYNCH SYNDROME HEREDITARY CANCER PUBLIC AWARENESS DAY! NEXT YEAR, IT IS ON FRIDAY, MARCH 22, 2013-----MARK THE DATE-----LETS MAKE IT THE BIGGEST EVER!
A BIG SUCCESS! LYNCH SYNDROME PUBLIC AWARENESS DAY ON MARCH 22, 2012 -- NEXT YEAR? GET YOUR PLANS READY!!!
FRIDAY, MARCH 22, 2013
This last year, many involved with Lynch syndrome from survivors to previvors, to caretakers, to medical professionals, to researchers, institutions, elected leaders and community cancer advocates and organizations stood together to make this the biggest day ever!
Thirty-five governors of the United States recognized or proclaimed Lynch Syndrome Public Awareness Day. This was so very important as no other cancer condition is so very treatable as most the cancers of Lynch syndrome and in doing so, we believe these actions of public awareness will not only assist in decreasing the incidents of cancers in those with Lynch syndrome, but will protect families and will save lives.
Major institutions such as Sloan Kettering and Northshore Health Systems to the smaller institutions of Sarasota Memorial Hospital, Sutter Health Systems in California and many others celebrated this day with public awareness programs.
Congressional Representative Ed Towns from Pennsylvania read information about Lynch syndrome into the Congressional Record, educating our elected representatives and Congressional member John Garamendi awarded Lynch Syndrome International with an award for our efforts.
Tens of thousands of brochures were distributed by volunteers working from a grass roots level, to medical providers and members of the general public. Across the nation, individuals wore blue commemorating the day as over a hundred thousand radio spots played information on Lynch syndrome and dozens of newspaper articles and internet blogs addressed Lynch syndrome.
Individual medical offices displayed posters and passed out information...it was the single most biggest day in the history of Lynch syndrome! And to its sucess, we are extremely grateful to the thousands of volunteers who stood up and made this day possible!
TOGETHER, WE CAN SAVE LIVES AND PROTECT FAMILIES FROM THE DEVASTATING CANCERS OF LYNCH SYNDROME. WE CAN AND WILL MAKE AN INCREDIBLE DIFFERENCE IN THE LIVES OF TENS OF THOUSANDS OF PEOPLE!
Volunteers with Lynch Syndrome International are involved in 4 campaigns per year.
March - Public awareness campaign for Colon Cancer Awareness Month.
During early summer, we participate in a field outreach campaign at the American Cancer Society, Relay for Life events.
September - Mass media campaign for endometrial and ovarian cancers
November - Family history campaign is initiated prior to Thanksgiving.
IF ONE PERSON CAN MAKE A DIFFERENCE, CAN YOU IMAGINE
WHAT THOUSANDS CAN DO?
They can stand up and make a difference, like....
some terrific volunteers did on November 13, 2011. The Fox Chase Center Center Risk Assessment program celebrated their 20th anniversary and LSI was there. MaryEileen Griffith and Brianna Banford, Lynch Syndrome International volunteer representatives, made certain our voice was there! We are so grateful for what our previvors, survivors, caretakers and medical professionals are doing in the communities to protect families and save lives! few photos of that event!
WHAT HAVE WE BEEN DOING
In November, LSI hosted a webinar featuring Anya Prince of the Cancer Legal Resource Center, a project of Loyola University in Los Angeles. Anya is the resident expert genetic discrimination law. It was extremely informative and excellent information was shared.
On October 22nd, we headed to San Jose and introduced ourselves to hundreds of Internists belonging to the American College of Physicians where we shared information on Lynch syndrome. Good news time! Most were quite knowledgable about it and knew the criteria for diagnostic testing Guess what? Northern California internists, including many of which were from Kaiser Permanente, are onboard with Lynch syndrome!
From October 11th through October 15th, LSI we were in Montreal, Quebec, Canada for the International Human Genetics Congress where we met individuals, worldwide, who are doing incredible things so we and our families may live. It was incredible to see individuals working from early morning into the late evenings, sharing information, reviewing one another's clinical studies and collaborating with one another. We had an opportunity to see Dr. Albert de Chapelle from the James Cancer Research Center at Ohio State University, Dr. Mark Clendenning from Australia, some terrific Lynch syndrome researchers from Newfoundland, a couple great ones from the University of Utah, Salt Lake City and many, many other individuals from UCLA Med Center, Baylor University and dozens of other institutions worldwide. A big thanks to the Genetic Alliance and to the American Society of Human Genetics for their kind invitation and sponsorship to this incredible event!
October 15th proved to be an exciting evening with the American Cancer Society at their Annual gala, at the community of the LSI headquarters and raising money for support and assistance to those who are fighting cancers.
On September 20th, Lynch Syndrome International held its first inaugural webcom featuring Dr. Uri Ladabaum, of Stanford University Medical School. Discussion included pathological tumor testing of Lynch syndrome tumors as a cost effective way to also diagnose individuals who were not previously diagnosed, in an attempt to detect those who either did not know their family history, had no knowledge of hereditary cancers and who may not have met the Amsterdam criteria. Discussed was the cost effective feature of diagnosing indivduals with the Lynch syndrome mutated genes and getting early and preventative treatment to deter cancer development. Research and practices of Dr. Ladabaum and others will enhance the quality of life for many and will protect families and save lives!
In September and October, LSI was in Southern California, in the Los Angeles area, spreading information on Lynch syndrome to primary care physicians and public health clinics. We had a chance to drop by and express gratitude to genetic counselors at the City Of Hope and Cedar Sinai. They're doing some great things.
We traveled to Sonoma, California to meet health care professionals and share information on Lynch syndrome at the University of California - Davis Healthcare Systems Gastroenterology and Hepatology Conference at "The Lodge" on August 21st and 22nd. Much gratitude to UC Davis -California for providing us this very important opportunity and donating exhibit space.
On August 25th, we headed back home to Vacaville and a Lynch Syndrome Awareness Night sponsored by North Bay Health Systems and Myriad Genetics. It was educationally packed evening for professionals and the public, we are thrilled they are actively pursuing public awareness. Vacaville hearts are a major reason why we are headquartered in this great town!
September 8th through 10th, we were with the terrific nurse navigators who make life so much easier for those of us experiencing cancer! Yep, we exhibited at their annual conference and rubbed shoulders with Matthew Zachary of Stupid Cancer! and Jonny Imerson of Imerson's Angels, as well as with many other passionate concered persons! When you need help, there is nothing like having a nurse navigator beside you. Visit their website and learn more about these wonderful people!
In August, LSI was in Seattle, Washington, meeting with individuals from the Genetic Alliance and contributing input as to the future of personalized medicine upon survivors and previvors as well as how it affected Lynch syndrome. We participated in a day long class that provided essential information on how to develop our own cancer registry and biobank for Lynch syndrome, in order to assist researchers and institutions in obtaining immediate subjects for clinical trials.
CALL TO MEETING
The annual meeting of Lynch Syndrome International was held on June 24, 2011, at the Marriott Courtyard, 2101 River Plaza Drive, Sacramento, California, from 8:30 a.m. to 4:30 p.m.
The morning session involved a meeting of the Board of Directors and installation of some terrific new Directors, including survivors, caretakers and medical professionals. Following a hosted lunch, a general meeting of stakeholders, survivors and previvors took place, to actively plan and organize goals for 2012 public awareness campaigns, support for survivors and previvors and fundraising efforts.
2011-2012 is going to be a great year for LSI, with lots of new events planned! Stay tuned!
ITS THAT TIME OF YEAR AGAIN --- GET YOUR TEAMS READY AND REV YOUR ENGINES!!!! PUT OUT THE WORD ABOUT LYNCH SYNDROME AT RELAY FOR LIFE EVENTS WITH YOUR OWN TEAM LSI !!!
For those of you who are participating in the Relay for Life events at your local American Cancer Society, they are advising not to distribute brochures. We highly support the American Cancer Society and their outstanding efforts and are proud to be listed within their national directory! So, get out to those Relay for Life events and put out the word about Lynch syndrome! It is there that the best field outreach to cancer survivors will occur and families at risk for Lynch syndrome will be discovered. Just think of all the families that will be protected and the lives saved! Just give us a call or email us and we will send you bracelets for your team and others you find at high risk!
TO LEARN MORE:
Contact us at: 707-689-5089
Much gratitude to NCCN (National Comprehensive Cancer Network) for sponsoring our exhibit at their Annual Guidelines meeting in Hollywood, Florida. It gave us a wonderful opportunity to meet dedicated physicians, nurses, nurse navigators, physicians assistants and others who are working hard to protect families and save lives and introduce them into our world of inherited cancers. The experiences there were invaluable...and will make a difference in the quality of lives for many!
MARCH 30, 2011 IS LYNCH SYNDROME HEREDITARY CANCERS PUBLIC AWARENESS DAY!
Some of the nation's finest leaders, including Governor Brewer of Arizona, Governor Hickenlooper of Colorado, Governor Kitzhaber of Oregon, Governor Sandoval of Nevada, Governor Nixon of Missouri, Governor Jindal of Louisiana and Governor Bentley of Alabama have stepped up to the plate and proclaimed Wednesday, March 30, 2011 Lynch Syndrome Hereditary Cancers Public Awareness Day in their states!
We are so very grateful to them for caring for those of us at risk for Lynch syndromes and for our families and so very grateful to other leaders who we hope will join them in the days to come!
Help us spread the word about Lynch syndrome and join us in our mission to protect families and save lives! Speak to your local newspapers and tell them your story - visit television and radio stations and encourage Public Service Announcements. Share information with your local church and urge your church leaders to put it within church newsletters, bulletins and announcements to the Congregations. Speak to your local organizations about Lynch syndrome and find out the policies of genetic testing within your own health care organizations. Put information out on blogs and upon the internet, write an Op-Ed piece for your newspaper or employment newsletter. Participate in Relay for Life Events and share the information with other cancer surviving families who often don't know. Even wear a T-Shirt with "Ask me about Lynch Syndrome" embossed upon the back. There is so very much we can do to protect families and save lives...all we have to do is put out the word and many, like us, can live far longer than we ever dreamed! All we have to do is put forth the effort and try!
WHEN YOU'RE INVOLVED WITH LSI, EVERY WEDNESDAY IS BLUE
Whoa, doggies...hold on there! Doesn't the song go, "Rainy days and Mondays always make me blue?"
Nope! Not anymore! Its the empowerment of taking control over our health and our lives that is motivating us to turn our selves blue on Wednesdays--that and the realization we do have control over the improvement of longevity of life and the quality of life!
So, wear blue on Wednesdays, in dedication to those who came before us and didn't have the opportunities and the blessing we have today and in gratitude to those who made it possible for us.
LSI IS NOW ON THE ASSOCIATION LIST FOR THE NATIONAL INSTITUTE OF HEALTH!
LSI has been designated as a referral, patient support organization by the National Institute of Health. We are very pleased they accepted our application and are now referring individuals with Lynch syndrome to us for support.
LSI IS ALSO NOW A STAKEHOLDER IN THE GAPPNET PROGRAM, SPONSORED BY THE CENTER FOR DISEASE CONTROL!
We are so very excited to be involved with such wonderful organizations who are working hard to make a difference in the lives of those who live with the high risk of inherited cancers. We WILL make a difference.
LSI WAS ALSO REPRESENTATED AT THE COLLABORATIVE GROUP OF THE AMERICAS - INHERITED COLON CANCERS - IT MAY TAKE A WHILE TO GET THEIR MEMBERS USED TO PATIENT ADVOCATES.
ALOHA - ACOG
LSI was represented on a panel of experts presenting on Lynch syndrome to a Regional Conference of the American Congress of Obstetricians and Gynecologists in October 2010, in Maui, Hawaii. This past May, we participated in a presentation in front of their National Conference and they were extremely receptive to hearing the stories of the survivors and previvors and the patient point of view. Thank you Doctors, for listening and for caring...and much gratitude to Myriad Pharmaceutical for giving us this opportunity!
FAITH BASED AWARENESS CAMPAIGN
It isn't easy work communicating via computer to churches throughout the world...however, we are very fortunate to have dedicated, persistent volunteers who are working hard to make certain this initiative is a success. It can be hard and tedious, but then again...the rewards of life are the goal...advocacy is far more than a quick comment or punching the keyboard to "like" a comment on FACEBOOK....its stepping outside yourself.
Team Great Britain is rocking, as well! Though caring for her own husband, who is ill, Jennifer has been educating thousands of students! Great job...did you know that Great Britain is very involved with LSI public awareness? Linda M., your humor, your passion and your dedication makes you our hero...
REVISED: November 11, 2011
UNIVERSITY OF ARIZONA CANCER CENTER
Chances are everyone knows someone with
cancer. When that person is someone in your
family, you might have questions about risks
of cancer for yourself or your children. This
program brings together experts from the
University of Arizona Cancer Center to cover
a broad range of topics about assessing and
reducing your cancer risk. In addition, a panel
of health care providers and survivors will be
available for question and answer sessions.
BREAST, COLON and BEYOND...
Answering Questions about Hereditary Cancer
Saturday, November 17, 2012
The University of Arizona Cancer Center
1515 N. Campbell Ave.
Registration and continental breakfast: 8 a.m.
Program: 8:30 a.m. – 1 p.m.
Free, Pre-registration required
Registration and information contact:
Cindy Laughren at 626-0950 or