Affordable Care Act For Individuals With Preexisting Conditions
California provides very poor coverage for the screenings for colorectal cancer, offering a $120 Medicare supplement for fecal occult testing for colorectal cancer or for a mammogram.
California Insurance Code ßß 10194 and 10194.2 (1999)1367.665 (2000
California Patient Law
California Health and Safety Code Section 1374.7
Prohibits prepaid health care plans from denying, canceling, refusing to renew or charging more for coverage, based on genetic characteristics. This is defined as a family history of genetic disorder or gene alterations causing or increasing tthe risk of disease or disorder.
Insurance Codes 10140 and 10146 to 10149
Prohibits life and disability income insurance companies from discrimination based on genetic characteristics, prohibits companies from requiring genetic tests and proscribes penalties for the unauthorized release of genetic test results.
In Home Support Services and Care
Civil Code Section 5617
Provides broad protection against unauthorized disclosure of genetic health results by health plans.
Medi-Cal Health Care Assistance Under Medi-Cal, individuals can receive surveillance testing and the health care they need to fight cancers. As well, genetic testing is provided.
California Major Risk Medical Insurance Program
The following offers no cost or low cost health care for surveillance testing and consists of womens cancer screenings and some colonoscopy screenings. Colonoscopy screenings for low/cost - no/cost health care can be obtained through physicians who accept Medi-cal or through the major University Health Care Hospitals.
Listed within these resources are HRSA federally funded health centers which offer medical services to individuals even if they don't have insurance. Services are provided on fees based upon an ability to pay. It is important for those who have Lynch syndrome to realize there are resources for cancer screening, once diagnosed.
The HRSA facilities are family health centers and are often operated by general practitioners and women's medical health professionals. It is important to use these facilities in a manner of first consulting the GP and providing him with the family history for assessment. The GP will then order specific testing and make referrals as needed, to other facilities which offer services which are provided on fees based upon an ability to pay. As well, resources include the CDC and other states' Colonoscopy programs, which are also provided with fees which are based upon an ability to pay.
Health and Human Services Information for Rural Californians
Complete List of Over 900 HRSA Health Centers in California which provide health care through a general practitioner or Women's Health expert
SOUTHERN CALIFORNIA HEALTH CARE CLINICS - Low or No Cost
Los Angeles County Health Care - Low or No Cost
El Proyecto del Barrio Family Health Care Clinic, 8902 Woodman Ave., Arleta, CA 818-830-7090 X 219
Westside Neighborhood Clinic, 1436 W. 23rd Street, Long, Beach, CA 562-595-5507
South Bay Family Healthcare Center, 742 Gardena Blvd, Gardena, CA 310 802-6170
AltaMed Health Services Corp 5427 Whittier Blvd, Los Angeles, CA 323-869-1900
Arroyo Vista Family Center, 6000 N. Figuero Street, Los Angeles, CA 323-254-5291
Asian Pacific Health Care Venture, Inc. 1530 Hillhurst Avenue #200, Los Angeles, Speaks: Cambodian, Cantonese, English, Mandarin, Japanese, Tagalog, Thai, Vietnamese
Clinica Msr Oscar A. Romero, 123 S. Alvarado St. Los Angeles, CA 213-989-7700 Speaks English, Spanish and Kanjobal (frm the Maya Region)
Clinica para las Americas 318 S. Alvarado St., Los Angeles, CA 213-484-8434
Hollywood Sunset Free Clinic 3324 Sunset Bld, Los Angeles, CA 323-660-7959
Northeast Community Clinic, 5809 N. Figueroa St., Los Angeles 323-256-3884
Pediatric and Family Medical Center, 1530 Olive Street, Los Angeles 213-746-1037
QueensCare Family Clinic, 3242 W. 8th Street, Los Angeles 213-368-9779
South Central Family Health Center, 4524 San Pedro Place, Los Angeles 323-233-1626 Speaks English, Korean, Spanish
T.H.E. Clinic, Inc. 3860 Martin Luther King Blvd, Los Angeles, CA 323-295-6571 Speaks English, French, Japanese, Tagalog, Spanish, Thai, Vietnamese
Los Angeles Free Clinic 8405 Beverly Blvd, Los Angeles 323-653-1990 Speaks English, Russian, Spanish
Watts Health Foundation, Inc. 10300S. Compton Avenue, Los Angeles, CA 323-564-4331
Mission City Community Nework, Inc. 15206 Parthenia St. North Hills, CA 818-895-3100
Valley Community Clinic, 6801 Coldwater Canyon Avenue, North Hollywood, CA 818-763-8836
Westside Family Health Care - Santa Monica
Westside Women's Health Center 1711 Ocean Park Blvd, Santa Monica, CA 310-450-4773
Women's Clinic - Los Angeles
Women's Clinic and Family Center - Los Angeles
Free Or Low-Cost Health Clinics - Los Angeles County
Harbor Free Clinic, 599 W. 9th Street San Pedro California 310-547-0176
UMMA Community Clinic 711 W. Florence Ave, Los Angeles (SouthCentral) 323-789-5610
Tarzana Treatment Center, Inc. 18646 Oxnard St., Tarzana 818-996-7019 Speaks Armenian, English, Russian and Spanish
Conejo Free Clinic - Thousand Oaks
Veterans Hospital - Loma Linda
South Bay Family Health Clinic - Torrance, California
Samuel Dixon Family Health Center, 31257 San Martinez Road, Val Verde, CA 805-257-4008
Venice Family Clinic, 604 Rose Avenue, Venice, California 310-392-8630 Speaks Russian on Monday and Thursday
City of Calexico Health Care
Saban Clinics, No Cost, Low Cost Cancer Screening Locations: West LA 323-653-1990
Altamed Health Service, Low Cost, No Cost Cancer Screening LA Whittier and Surrounding Area
Community Health Center - Chinatown 767 N. Hill St., Suite 200, Los Angeles, CA 213-808-1700
Chinatown Service Center Community Health Center - San Gabriel Valley, 320 S. Garfield Ave #118, Alhambra, CA. 91801 213-808-1700
Orange County Health Care - Low or No Cost
Share Ourselves Free Clinic, 1550 Superior Avenue, Costa Mesa 949-650-0640
Costa Mesa Medical Clinic, 745 W. 19th Street Suite F, Costa Mesa, CA 949-574-0210
St. Jude Medical Center Mobile Health Clinic 101 E. Valencia Mesa Drive, Fullerton, CA 714-446-7084
Sierra Health Center, 1815 West Avenue Suites E-G, Fullerton, California 714-870-0717
Nhan Hoa Comprehensive Health Care Clinic, 14221 Euclid St. Ste H, Garden Grove, CA 714-539-9999 Speaks English and Vietnamese
Huntington Beach Community Clinic, 8401 Newman Ave, Huntington Beach, CA 714-847-4222
OC Quality Health Care, 6552 Bolsa Avenue, #D Huntington Beach, CA 714-907-0775
Laguna Beach Community Clinic 362 3rd AVenue, Laguna Beach, CA 949-494-0761 X 10
Gary Center, 341 Hillcrest St., La Habra, CA 562-691-3263
El Toro Medical Clinic 23823 El Toro Road, Lake Forest, CA 949-380-1227
Lestonnac Free Clinic, 1215 E. Chapman Avenue, Orange, CA 714-633-4600
Living Well Medical Clinic, 1234 W. Chapman Avenue #203, Orange, CA 714-633-4673
La Amistad Clinic, 353 S. Main Street, Orange CA 714-771-8252
Orange County Public Health Clinics -
Orange County Free Clinics
Community Care Health Centers - Huntington Beach, Santa Ana, Orange County
Student Health Center, Irvine, California
University of Irvine Family Health Center, 300 W. Carl Karcher Way, Anaheim, CA 714-456-5100 (Speaks English, Spanish, Vietnamese)
Moorpark Family Care Center, 35 W. Los angeles, Avenue, Moorpark, CA 805-529-4624
Mission Hospital's Camino Health Center, 30300 Camino Capistrano, San Juan Capistrano, CA
Free Health Plan 1515 S. Broadway #D, Santa Ana, CA 714-285-9883
Free Health Plan, 2209 S. Main Street, Santa Ana, CA 714-668-1750
Ruiz Patel Medical Clinic, 1430 W. First St., Santa Ana, CA 714-544-3430
UCI Family Health Center, 800 N. Main Street, Santa Ana, CA 714-456-7002
Vietnamese Comm. of Orange County, Asian Health Center, 5015 W. Edinger Avenue Suites K-L, Santa, Ana, CA 714-418-2040 Speaks English and Vietnamese
San Diego County _Low or No Cost
San Diego, California No Cost or Low-Cost Clinics
Magnolia Family Health Center and Womens Clinic 120 W. Magnolia, Oxnard, CA 805-981-5151
Las Flores Women's Center, 2500 S. C Street, #D Oxnard, CA
Santa Paula Family Health Care Clinic 1334 E. Main Street, Santa Paula, California 805-933-8445
Sierra Vista Family Care, 4531 Alamo St., Simi Valley, CA 805-584-4885
Simi Valley Public Health, 660 E. Los Angeles Avenue, Simi Valley, CA 93065 805-578-3675
Riverside County Health Care - Low or No Cost
Ruiz Patel Medical Clinic, 401 S. Lincoln Avenue, Corona, CA 951-372-0010
Northern California Health Care Low or No Cost
Feminist Women's Health - Chico, Redding, Sacramento
Stanford University - Palo Alto, California
Stanford Hospital, Palo Alto, California
Women's Community Clinic - San Francisco
Lyon Martin Health Services - San Francisco
List of Health Clinics - Berkeley and Oakland
University of California-San Francisco Women's Health - San Francisco, CA
San Francisco No Cost and Low Cost Health Care
Healthy San Francisco - San Francisco, CA
Shalom Free Clinic - Chico
San Jose Free Clinics - San Jose, California
Davis Community Clinic - Davis, California
Gardner Health Center, San Jose, California (Los Cost, No Cost Cancer Care)
Alviso Health Center, Alviso, California 408-935-3900
Comprecare Health Center, San Jose, California 408-272-6300
Gardner Health Center, South County, Gilroy, California 408-848-9400
St. James Health Center, San Jose, California 408-918-2600
California State Subsidy Health Care Programs - Santa Cruz Health Care
MAJOR CANCER CENTERS
VA (Veterans) McClellan (Sacramento) Outpatient Care
Cedar Sinai Comprehensive Cancer Center, Los Angeles, California
Burnham Institute, La Jolla, California
Jonsson Comprehensive Cancer Center, Los Angeles
Stanford Medical Center, Palo Alto, California (An NCI Institution)
UCLA Medical Center, Los Angeles, California (An NCI Institution)
University of California - Davis Medical Center, Sacramento, California (An NCI Institution)
University of California, Helen Diller Cancer Center, San Francisco (An NCI Institution) Genetic Testing
Information on Lynch Syndrome
USC - Norris Comprehensive Cancer Center, Los Angeles, CA (an NCI Institution)
Chao Family Comprehensive Cancer Center, Irvine, California (an NCI Institution)
City of Hope Comprehensive Cancer Center, Duarte, California (An NCI Institution)
Robert and Beverly Lewis Family Cancer Care Center, Pomona, Califonria
Veterans Affairs Medical Centers:
Fresno Livermore Palo Alto Loma Linda Long Beach Los Angeles Mather, Menlo Park
San Diego San Francisco
Veterans Affairs Outpatient Facilities
California Colon Cancer Control Program (CCCCP) 1616 Capitol Avenue, Suite
74.421 Sacramento, CA 95814-5052 916-449-5300
California State Low Cost Health Care Programs
California possesses ovarian cancer legislation. State legislation on ovarian cancer: Requires the Department of Health to provide awareness and screening information to consumers, patients, and health care providers (not fully funded)Requires insurance companies to reimburse patients for medically accepted cancer screening tests (CA-125, etc.) Requires physicians and surgeons who are primarily responsible for conducting annual gynecological examinations to provide patients with a standardized summary in language understood by the patient, describing symptoms and methods of diagnosis for gynecologic cancers.
California Genetic Discrimination Law - Insurance Code
742.405. (a) No multiple employer welfare arrangement shall refuse
to enroll any person or accept any person as a subscriber or renew
any person as a subscriber after appropriate application on the basis
of a person's genetic characteristics that may, under some
circumstances, be associated with disability in that person or that
person's offspring. No multiple employer welfare arrangement shall
require a higher rate or charge, or offer or provide different terms,
conditions, or benefits, on the basis of a person's genetic
characteristics that may, under some circumstances, be associated
with disability in that person or that person's offspring than is at
that time required of any other individual in an otherwise identical
classification, nor shall any multiple employer welfare arrangement
make or require any rebate, discrimination, or discount upon the
amount to be paid or the service to be rendered under the arrangement
because the person carries those traits.
(b) No multiple employer welfare arrangement shall seek
information about a person's genetic characteristics for any
(c) No discrimination shall be made in the fees or commissions of
a solicitor or solicitor firm for an enrollment or a subscription or
the renewal of an enrollment or subscription of any person on the
basis of a person's genetic characteristics that may, under some
circumstances, be associated with disability in that person or that
(d) "Genetic characteristics" as used in this section shall have
the same meaning as defined in Section 10123.3.
742.407. (a) This section shall apply to the disclosure of genetic
test results contained in an applicant or enrollee's medical records
by a multiple employer welfare arrangement.
(b) Any person who negligently discloses results of a test for a
genetic characteristic to any third party in a manner that identifies
or provides identifying characteristics of the person to whom the
test results apply, except pursuant to a written authorization as
described in subdivision (g), shall be assessed a civil penalty in an
amount not to exceed one thousand dollars ($1,000) plus court costs,
as determined by the court, which penalty and costs shall be paid to
the subject of the test.
(c) Any person who willfully discloses the results of a test for a
genetic characteristic to any third party in a manner that
identifies or provides identifying characteristics of the person to
whom the test results apply, except pursuant to a written
authorization as described in subdivision (g), shall be assessed a
civil penalty in an amount not less than one thousand dollars
($1,000) and no more than five thousand dollars ($5,000) plus court
costs, as determined by the court, which penalty and costs shall be
paid to the subject of the test.
(d) Any person who willfully or negligently discloses the results
of a test for a genetic characteristic to a third party in a manner
that identifies or provides identifying characteristics of the person
to whom the test results apply, except pursuant to a written
authorization as described in subdivision (g), that results in
economic, bodily, or emotional harm to the subject of the test, is
guilty of a misdemeanor punishable by a fine not to exceed ten
thousand dollars ($10,000).
(e) In addition to the penalties listed in subdivisions (b) and
(c), any person who commits any act described in subdivision (b) or
(c) shall be liable to the subject for all actual damages, including
damages for economic, bodily, or emotional harm which is proximately
caused by the act.
(f) Each disclosure made in violation of this section is a
separate and actionable offense.
(g) The applicant's "written authorization," as used in this
section, shall satisfy the following requirements:
(1) Is written in plain language.
(2) Is dated and signed by the individual or a person authorized
to act on behalf of the individual.
(3) Specifies the types of persons authorized to disclose
information about the individual.
(4) Specifies the nature of the information authorized to be
(5) States the name or functions of the persons or entities
authorized to receive the information.
(6) Specifies the purposes for which the information is collected.
(7) Specifies the length of time the authorization shall remain
(8) Advises the person signing the authorization of the right to
receive a copy of the authorization. Written authorization is
required for each separate disclosure of the test results, and the
authorization shall set forth the person or entity to whom the
disclosure would be made.
(h) This section shall not apply to disclosures required by the
Department of Health Services necessary to monitor compliance with
Chapter 1 (commencing with Section 124975) of Part 5 of Division 106
of the Health and Safety Code, nor to disclosures required by the
Department of Managed Health Care necessary to administer and enforce
compliance with Section 1374.7 of the Health and Safety Code.
10140. (a) No admitted insurer, licensed to issue life or
disability insurance, shall fail or refuse to accept an application
for that insurance, to issue that insurance to an applicant therefor,
or issue or cancel that insurance, under conditions less favorable
to the insured than in other comparable cases, except for reasons
applicable alike to persons of every race, color, religion, sex,
national origin, ancestry, or sexual orientation. Race, color,
religion, national origin, ancestry, or sexual orientation shall not,
of itself, constitute a condition or risk for which a higher rate,
premium, or charge may be required of the insured for that insurance.
Unless otherwise prohibited by law, premium, price, or charge
differentials because of the sex of any individual when based on
objective, valid, and up-to-date statistical and actuarial data or
sound underwriting practices are not prohibited.
(b) Except as otherwise permitted by law, no admitted insurer,
licensed to issue disability insurance policies for hospital,
medical, and surgical expenses, shall fail or refuse to accept an
application for that insurance, fail or refuse to issue that
insurance to an applicant therefor, cancel that insurance, refuse to
renew that insurance, charge a higher rate or premium for that
insurance, or offer or provide different terms, conditions, or
benefits, or place a limitation on coverage under that insurance, on
the basis of a person's genetic characteristics that may, under some
circumstances, be associated with disability in that person or that
(c) No admitted insurer, licensed to issue disability insurance
for hospital, medical, and surgical expenses, shall seek information
about a person's genetic characteristics for any nontherapeutic
(d) No discrimination shall be made in the fees or commissions of
agents or brokers for writing or renewing a policy of disability
insurance, other than disability income, on the basis of a person's
genetic characteristics that may, under some circumstances, be
associated with disability in that person or that person's offspring.
Monday, 09 July 2012 | 2698 hits
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.
If you have any questions or comments about this study, please contact Kristen Dilzell at firstname.lastname@example.org .
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!
Write to us at email@example.com 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
LSI volunteers have worked on and are currently working on our "faith based" project and asking churches worldwide to join us in our mission of protecting families and saving lives by educating their congregations about Lynch syndrome. Though we are in the early stages of this initiative, we have reached approximately 1000 churches, to date with a total population of congregants of 500,000 people. We have a long way to go. We hope to reach over 25 millon people within the next year, with this effort!
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.
If you wish to be involved in this campaign, please contact us at firstname.lastname@example.org.
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
Monday, 15 February 2010 | 15861 hits