Free the Data raises awareness about the need to share genetic variation freely. While millions of people receive mutation reports annually, these mutations are usually not publishable in journals and do not appear in the public domain. Watch the video and/or click the link below for more information -- and learn how to free your data!
FREE THE DATA
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Thursday, November 14, 2013
Wednesday, November 6, 2013
Ellen T. Matloff Featured as Guest Lecturer of the Max and Marian Farash Community Lecture Series
Original post by William and Hobart Smith Colleges
The Colleges hosted a standing-room only crowd for a lecture on genetic counseling by Yale research scientist and Geneva High School graduate Ellen T. Matloff, as a distinguished guest lecturer of the Max and Marian Farash Community Lecture series on Oct. 24. Matloff was introduced by Courtney Franceschi '16, also a GHS alum. Colleges President Mark D. Gearan reflected on the promise and success of these remarkable women in a guest essay which appeared in the Democrat and Chronicle's online edition (full article featured below).
"The crowd Thursday night celebrated the great promise of local students like Courtney Franceschi, the success of residents like Ellen Matloff who are making a remarkable difference, and the enduring legacy of Max and Marian Farash whose generosity continues to transform lives," wrote Gearan.
Gearan is chair of the Talloires Network Steering Committee, an international association of more than 200 institutions on six continents committed to strengthening the civic roles and social responsibilities of higher education. He is also the co-chair of the National Advisory Board on Public Service at Harvard College and serves on the Presidential Advisory Group for the NCAA. He is a Board member of the Commission on Independent Colleges and Universities and a former Board member of The Partnership for Public Service. Gearan is also past chair of the Board of Directors of National Campus Compact, the Corporation for National and Community Service, and the Board of Directors of the Annapolis Group.
He served as Director of the Peace Corps and was Assistant to the President, Director of Communications and Deputy Chief of Staff in the White House. Gearan is a former member of the White House Council for Community Solutions, a group of cross-sector leaders appointed by President Barack Obama to recommend collaborative solutions to increase civic engagement. Locally, he serves on the advisory councils of the Happiness House Foundation, Ontario ARC and the Geneva Community Center.
Democrat and Chronicle
Web Essay: Past, present, future success stories connect
Mark D. Gearan • Guest Essayist• October 30, 2013
When Courtney Franceschi walked into the admissions office at Hobart and William Smith Colleges in the spring of 2012, she had no idea that two people she had never met were about to change her life. Franceschi describes the moment as surreal, something that she still hasn't fully processed.
On that day, the HWS assistant director of admissions handed Franceschi a folder that detailed a scholarship that would pay for all four years of college at HWS including tuition, room, board, living expenses and study abroad. As a first generation college student from Geneva, Ontario County, Franceschi had been selected to be a member of the inaugural Farash First in Family Scholarship program, made possible through the generosity of the Max and Marian Farash Charitable Foundation, based in Rochester.
Today, Franceschi is a sophomore in the pre-med program at HWS with plans to major in biology and minor in sociology. She's a teaching fellow in the chemistry department and manager of a theme residence house, "Random Acts of Kindness," that promotes community service projects locally, nationally and internationally. She's involved in the Geneva 2020 initiative, a collective impact project to advance the local school district. And last summer, she had an internship at a school in Haiti, where she saw firsthand how organizations like Doctors Without Borders, which she would like to one day join, are making a difference. She recently told me that the Farash Scholarship "opened my world in ways that can't be measured. No one can truly realize the actual effect a gift like this can have on a life. It has given me opportunity."
On Oct. 24, Franceschi introduced Yale research scientist Ellen T. Matloff at a public lecture sponsored by the Max and Marian Farash Charitable Foundation. Like Franceschi, Matloff is a graduate of Geneva High School. She delivered a talk titled "The Angelina Jolie Effect: Genetic Testing in 2013." Matloff joined Yale in 1995 to start the Genetic Counseling Program, which is now one of the largest in the country. She provides counseling to individuals and families who are considering undergoing genetic testing in relation to hereditary breast, ovarian and colon cancer syndromes, as well as rare cancers. As a highly publicized example, Angelina Jolie's proactive, preventative double mastectomy was discussed.
The crowd Thursday night celebrated the great promise of local students like Courtney Franceschi, the success of residents like Ellen Matloff who are making a remarkable difference, and the enduring legacy of Max and Marian Farash whose generosity continues to transform lives.
Click here to access the original post via Hobart and William Smith Colleges
Read more!
The Colleges hosted a standing-room only crowd for a lecture on genetic counseling by Yale research scientist and Geneva High School graduate Ellen T. Matloff, as a distinguished guest lecturer of the Max and Marian Farash Community Lecture series on Oct. 24. Matloff was introduced by Courtney Franceschi '16, also a GHS alum. Colleges President Mark D. Gearan reflected on the promise and success of these remarkable women in a guest essay which appeared in the Democrat and Chronicle's online edition (full article featured below).
"The crowd Thursday night celebrated the great promise of local students like Courtney Franceschi, the success of residents like Ellen Matloff who are making a remarkable difference, and the enduring legacy of Max and Marian Farash whose generosity continues to transform lives," wrote Gearan.
Gearan is chair of the Talloires Network Steering Committee, an international association of more than 200 institutions on six continents committed to strengthening the civic roles and social responsibilities of higher education. He is also the co-chair of the National Advisory Board on Public Service at Harvard College and serves on the Presidential Advisory Group for the NCAA. He is a Board member of the Commission on Independent Colleges and Universities and a former Board member of The Partnership for Public Service. Gearan is also past chair of the Board of Directors of National Campus Compact, the Corporation for National and Community Service, and the Board of Directors of the Annapolis Group.
He served as Director of the Peace Corps and was Assistant to the President, Director of Communications and Deputy Chief of Staff in the White House. Gearan is a former member of the White House Council for Community Solutions, a group of cross-sector leaders appointed by President Barack Obama to recommend collaborative solutions to increase civic engagement. Locally, he serves on the advisory councils of the Happiness House Foundation, Ontario ARC and the Geneva Community Center.
Democrat and Chronicle
Web Essay: Past, present, future success stories connect
Mark D. Gearan • Guest Essayist• October 30, 2013
When Courtney Franceschi walked into the admissions office at Hobart and William Smith Colleges in the spring of 2012, she had no idea that two people she had never met were about to change her life. Franceschi describes the moment as surreal, something that she still hasn't fully processed.
On that day, the HWS assistant director of admissions handed Franceschi a folder that detailed a scholarship that would pay for all four years of college at HWS including tuition, room, board, living expenses and study abroad. As a first generation college student from Geneva, Ontario County, Franceschi had been selected to be a member of the inaugural Farash First in Family Scholarship program, made possible through the generosity of the Max and Marian Farash Charitable Foundation, based in Rochester.
Today, Franceschi is a sophomore in the pre-med program at HWS with plans to major in biology and minor in sociology. She's a teaching fellow in the chemistry department and manager of a theme residence house, "Random Acts of Kindness," that promotes community service projects locally, nationally and internationally. She's involved in the Geneva 2020 initiative, a collective impact project to advance the local school district. And last summer, she had an internship at a school in Haiti, where she saw firsthand how organizations like Doctors Without Borders, which she would like to one day join, are making a difference. She recently told me that the Farash Scholarship "opened my world in ways that can't be measured. No one can truly realize the actual effect a gift like this can have on a life. It has given me opportunity."
On Oct. 24, Franceschi introduced Yale research scientist Ellen T. Matloff at a public lecture sponsored by the Max and Marian Farash Charitable Foundation. Like Franceschi, Matloff is a graduate of Geneva High School. She delivered a talk titled "The Angelina Jolie Effect: Genetic Testing in 2013." Matloff joined Yale in 1995 to start the Genetic Counseling Program, which is now one of the largest in the country. She provides counseling to individuals and families who are considering undergoing genetic testing in relation to hereditary breast, ovarian and colon cancer syndromes, as well as rare cancers. As a highly publicized example, Angelina Jolie's proactive, preventative double mastectomy was discussed.
The crowd Thursday night celebrated the great promise of local students like Courtney Franceschi, the success of residents like Ellen Matloff who are making a remarkable difference, and the enduring legacy of Max and Marian Farash whose generosity continues to transform lives.
Click here to access the original post via Hobart and William Smith Colleges
Read more!
Friday, November 1, 2013
Before Angelina: Portraits of Breast Cancer Previvors and Survivors
Original story from TIME, 10/28/13
In honor of Breast Cancer Awareness Month, TIME photographed 15 women who chose to have preventative double mastectomies after learning they carry the BRCA1 or BRCA2 mutations, years before Angelina Jolie’s New York Times Op-ed renewed the conversation about the genetic risk factors and surgical decisions. These mutations can increase the risk of breast cancer by up to 80% and the risk of ovarian cancer by 45%, which prompts many women to decide to remove their breasts even before any signs of cancer. Those who test positive for the mutations also have a 50% chance of passing the gene to their children. Here are their stories.
Read more!
In honor of Breast Cancer Awareness Month, TIME photographed 15 women who chose to have preventative double mastectomies after learning they carry the BRCA1 or BRCA2 mutations, years before Angelina Jolie’s New York Times Op-ed renewed the conversation about the genetic risk factors and surgical decisions. These mutations can increase the risk of breast cancer by up to 80% and the risk of ovarian cancer by 45%, which prompts many women to decide to remove their breasts even before any signs of cancer. Those who test positive for the mutations also have a 50% chance of passing the gene to their children. Here are their stories.
Read more!
Thursday, October 24, 2013
Myriad Sues Quest Over BRCA1/2 Patents
Original post on GenomeWeb, 10/24/13
Myriad Genetics yesterday filed a suit against Quest Diagnostics alleging patent infringement, the fourth lawsuit Myriad has filed against a competitor following a US Supreme Court ruling on patents covering BRCA1 and BRCA2 gene testing.
The lawsuit was filed in US District Court for the District of Utah, Central Division, and in addition to Myriad, the plaintiffs include the Trustees of the University of Pennsylvania, the Hospital for Sick Children in Toronto, and Canadian firm Endorecherche.
The plaintiffs allege Quest infringes eight patents covering BRCA1/2 genes — US Patent No. 5,709,999; No. 5,747,282; No. 5,753,441; No. 5,837,492; No. 6,033,857; No. 6,051,379; No. 6,951,721; and No. 7,250,497.
This week's development follows Quest's lawsuit filed almost two weeks ago seeking a declaration that its test, called BRCAvantage and launched last week, does not infringe Myriad's patents. Myriad similarly sued GeneDx last week, claiming that that firm infringes 14 patents held by Myriad and the other plaintiffs covering BRCA1/2 testing.
During the summer, the Salt Lake City company took Ambry Genetics and Gene by Gene to court after those firms commercialized BRCA1/2 gene tests that Myriad claimed infringes its patents. The two companies have fired back with their own lawsuit accusing Myriad of antitrust violations.
Another firm, Counsyl, also sued Myriad in September and asked a California federal district court to preemptively declare it does not infringe Myriad's patents.
The impetus for the legal free-for-all is a June ruling from SCOTUS that Myriad's competitors have interpreted as a green light to enter the BRCA1/2 gene testing space, a market that Myriad had owned almost exclusively in the US.
In its decision, SCOTUS ruled that human genes cannot be patented. However, synthetic DNA, or cDNA, can be patented.
Myriad has maintained that in spite of the ruling, it still has 500 valid and enforceable claims in 24 patents underlying its test called BRACAnalysis.
In its action against Quest, Myriad seeks a jury trial, damages, a preliminary injunction against Quest from selling or marketing products that allegedly infringe Myriad's patents, and an order that Quest deliver to Myriad products that it believes infringes the patents for possible destruction.
In an e-mail to GenomeWeb Daily News a Quest spokesperson said that the firm expected Myriad's lawsuit and called it "merely the latest in a pattern of behavior toward any test provider that introduces a new option in BRCA testing that can benefit patients.
"We are confident that our offering does not violate any Myriad claims," she added. "We will vigorously defend, and continue to provide, BRCAvantage to the many patients who seek options in BRCA testing."
Click here to see the original post on GenomeWeb
Read more!
Myriad Genetics yesterday filed a suit against Quest Diagnostics alleging patent infringement, the fourth lawsuit Myriad has filed against a competitor following a US Supreme Court ruling on patents covering BRCA1 and BRCA2 gene testing.
The lawsuit was filed in US District Court for the District of Utah, Central Division, and in addition to Myriad, the plaintiffs include the Trustees of the University of Pennsylvania, the Hospital for Sick Children in Toronto, and Canadian firm Endorecherche.
The plaintiffs allege Quest infringes eight patents covering BRCA1/2 genes — US Patent No. 5,709,999; No. 5,747,282; No. 5,753,441; No. 5,837,492; No. 6,033,857; No. 6,051,379; No. 6,951,721; and No. 7,250,497.
This week's development follows Quest's lawsuit filed almost two weeks ago seeking a declaration that its test, called BRCAvantage and launched last week, does not infringe Myriad's patents. Myriad similarly sued GeneDx last week, claiming that that firm infringes 14 patents held by Myriad and the other plaintiffs covering BRCA1/2 testing.
During the summer, the Salt Lake City company took Ambry Genetics and Gene by Gene to court after those firms commercialized BRCA1/2 gene tests that Myriad claimed infringes its patents. The two companies have fired back with their own lawsuit accusing Myriad of antitrust violations.
Another firm, Counsyl, also sued Myriad in September and asked a California federal district court to preemptively declare it does not infringe Myriad's patents.
The impetus for the legal free-for-all is a June ruling from SCOTUS that Myriad's competitors have interpreted as a green light to enter the BRCA1/2 gene testing space, a market that Myriad had owned almost exclusively in the US.
In its decision, SCOTUS ruled that human genes cannot be patented. However, synthetic DNA, or cDNA, can be patented.
Myriad has maintained that in spite of the ruling, it still has 500 valid and enforceable claims in 24 patents underlying its test called BRACAnalysis.
In its action against Quest, Myriad seeks a jury trial, damages, a preliminary injunction against Quest from selling or marketing products that allegedly infringe Myriad's patents, and an order that Quest deliver to Myriad products that it believes infringes the patents for possible destruction.
In an e-mail to GenomeWeb Daily News a Quest spokesperson said that the firm expected Myriad's lawsuit and called it "merely the latest in a pattern of behavior toward any test provider that introduces a new option in BRCA testing that can benefit patients.
"We are confident that our offering does not violate any Myriad claims," she added. "We will vigorously defend, and continue to provide, BRCAvantage to the many patients who seek options in BRCA testing."
Click here to see the original post on GenomeWeb
Read more!
Tuesday, October 15, 2013
Who Can Challenge Myriad's Monopoly In Breast Cancer Gene Tests?
Original post on Forbes.com by Mathhew Herper, 10/15/13
Four months after a Supreme Court decision that invalidated some patents on Myriad Genetics’ tests for breast and ovarian cancer risk, the Salt Lake City biotechnology firm is facing a new, and very big, competitor: Quest Diagnostics, the $7 billion (sales) maker of laboratory tests.
Quest will offer the most comprehensive version of the tests, which look at variation in the DNA in the BRCA1 and BRCA2 genes, for $2,500, about 40% less than Myriad charges. Simpler tests, which can look for particular spelling variation because of a patient’s family history or ethnicity, will cost $500.
“We’re certainly starting to see the classic race to the bottom I’ll be astonished if the price isn’t under $500 for the whole thing pretty soon,” says George Sledge, Chief of the Division of Oncology at Stanford University. “The actual analysis if you’re not using 1995 technology the prices should be super-cheap because the price of sequencing is following a super-Moore’s law track. It doesn’t make much sense from a technology standpoint that it should be this expensive.”
Not everyone agrees that a race to the bottom is in the works. Myriad has several advantages over other players: it has other patents that were not touched by the Supreme Court decision; it controls a proprietary database of which variants in the BRCA1 and BRCA2 genes increase the risk of breast and ovarian cancer, and by how much; and it has developed a good reputation among cancer doctors and gynecologists, who have no reason to switch to a new test just because it is cheaper so long as insurers pay for the old one. Myriad has reason to fight, because it gets much of its $613 million in annual sales from sales of the BRCA tests.
The first two challengers, Ambry Genetics and Gene-By-Gene, are already embroiled in a legal battle with Myriad. And Myriad isn’t showing any signs of backing down for Quest. When Quest sued it ahead of its product launch, a Myriad spokesman told GenomeWeb that it would be “premature to comment” but that the patents around the tests are “valid and enforceable.”
Sue Friedman, the executive director of Facing Our Risk of Cancer, a patient group that advocates for people with hereditary cancer risk, says she still hopes Quest’s entry is a move toward healthy competition. “We’re hoping that having another laboratory that has a reputation for high quality lab tasting to offer testing to patients will drive the cost down,” she says.
Click here to see the original story on Forbes.com
Read more!
Four months after a Supreme Court decision that invalidated some patents on Myriad Genetics’ tests for breast and ovarian cancer risk, the Salt Lake City biotechnology firm is facing a new, and very big, competitor: Quest Diagnostics, the $7 billion (sales) maker of laboratory tests.
Quest will offer the most comprehensive version of the tests, which look at variation in the DNA in the BRCA1 and BRCA2 genes, for $2,500, about 40% less than Myriad charges. Simpler tests, which can look for particular spelling variation because of a patient’s family history or ethnicity, will cost $500.
“We’re certainly starting to see the classic race to the bottom I’ll be astonished if the price isn’t under $500 for the whole thing pretty soon,” says George Sledge, Chief of the Division of Oncology at Stanford University. “The actual analysis if you’re not using 1995 technology the prices should be super-cheap because the price of sequencing is following a super-Moore’s law track. It doesn’t make much sense from a technology standpoint that it should be this expensive.”
Not everyone agrees that a race to the bottom is in the works. Myriad has several advantages over other players: it has other patents that were not touched by the Supreme Court decision; it controls a proprietary database of which variants in the BRCA1 and BRCA2 genes increase the risk of breast and ovarian cancer, and by how much; and it has developed a good reputation among cancer doctors and gynecologists, who have no reason to switch to a new test just because it is cheaper so long as insurers pay for the old one. Myriad has reason to fight, because it gets much of its $613 million in annual sales from sales of the BRCA tests.
The first two challengers, Ambry Genetics and Gene-By-Gene, are already embroiled in a legal battle with Myriad. And Myriad isn’t showing any signs of backing down for Quest. When Quest sued it ahead of its product launch, a Myriad spokesman told GenomeWeb that it would be “premature to comment” but that the patents around the tests are “valid and enforceable.”
Sue Friedman, the executive director of Facing Our Risk of Cancer, a patient group that advocates for people with hereditary cancer risk, says she still hopes Quest’s entry is a move toward healthy competition. “We’re hoping that having another laboratory that has a reputation for high quality lab tasting to offer testing to patients will drive the cost down,” she says.
Click here to see the original story on Forbes.com
Read more!
Thursday, October 3, 2013
The Angelina Jolie Effect: What Every Woman Should Know About Her Genetics
The JCC of Woodbridge will be hosting "The Angelina Jolie Effect: What Every Woman Should Know About Her Genetics", tonight from 7:00 - 9:00pm. This talk will include a panel of medical experts from Yale, including genetic counselor Ellen T. Matloff.
Location:
Jewish Community Center,
360 Amity Road,
Woodbridge, CT, 06525,
Phone: 203-387-2424,
Fax: 203-387-1818,
egroves@jewishnewhaven.org
Contact:
Enid Groves,
Phone: 203-387-2424
Fax: 203-387-1818
egroves@jewishnewhaven.org
JCC - The Angelina Effect
Read more!
Location:
Jewish Community Center,
360 Amity Road,
Woodbridge, CT, 06525,
Phone: 203-387-2424,
Fax: 203-387-1818,
egroves@jewishnewhaven.org
Contact:
Enid Groves,
Phone: 203-387-2424
Fax: 203-387-1818
egroves@jewishnewhaven.org
JCC - The Angelina Effect
Read more!
Wednesday, October 2, 2013
Mammography techs ordering their own genetic testing? It appears our suspicion was correct.
A concerned referring physician of ours recently called to report that her confused and somewhat panicked patient just returned from her mammography appointment to say that the tech ordered genetic testing. Based on the patient’s questions and concerns it appeared she had received no genetic counseling and had no informed consent discussion. Additionally, she did not know what test had been ordered and she had no follow-up plan to discuss her test results. The physician was upset and asked, "Is this something that is happening now? Is it common for mammo techs to order this testing? I’m not really sure what to tell the patient or where to go from here if she tests positive. Isn’t this what a genetic counselor is for? Is it just me or does this seem like it could go really bad…?"
No, it isn't just you. This could be a disaster in the making for not only the patients, but also the well-meaning professionals, likely with no education in genetics, who are being subjected to great liability by offering services far outside their professional scope. Read more!
No, it isn't just you. This could be a disaster in the making for not only the patients, but also the well-meaning professionals, likely with no education in genetics, who are being subjected to great liability by offering services far outside their professional scope. Read more!
Thursday, September 26, 2013
'The Angelina Jolie Effect' symposium offers inspiration, information
Original post 9/25/13, The Middletown Press
For actress, author and activist Angelina Jolie, beauty is a trademark as much as her talents on stage and screen, her relationship with Brad Pitt and the children they share and her philanthropic projects for refugees. Today she has a new distinction, known simply as the Angelina Jolie Effect - her pro-active response to the threat of breast cancer and ovarian cancer and her decision to undergo a preventive double mastectomy as well as her announced plans to have her ovaries removed.
To celebrate her decision and to educate all women and men about women's cancers, the public is invited to a symposium "The Angelina Jolie Effect: What Every Woman Should Know About Her Genetics" on Thursday, October 3 at 7 p.m. at the Jewish Community Center, 360 Amity Road, Woodbridge.
As an inspiration to encourage women to take a proactive stance on their health, Jolie had undergone BRCA gene testing and discovered she had an 87 percent risk of developing breast cancer as well as a 44 percent chance of developing ovarian cancer. Her mother, grandmother and aunt died of breast or ovarian cancer, all at a young age.
Because of her mastectomy, her risks were lowered to less than 5 percent. Her decision to go public in May 2013 opened a free flowing discussion on this sensitive topic.
A panel of medical experts from the Yale University School of Medicine will include: James J. Farrell, M.D., Director, Yale Center for Pancreatic Diseases, Associate Professor of Medicine, Section of Digestive Diseases; Erin Wysong Hofstatter, M.D., Assistant Professor of Medicine,Breast Cancer Program; Ellen T. Matloff, M.S., C.G.C., Director, Cancer Genetic Counseling,Yale Cancer Center; and Elena Ratner, M.D., Assistant Professor of Obstetrics, Gynecology, and Reproductive Sciences.
Pre-registration is required to egroves@jewishnewhaven.org or www.jewishnewhaven.org. The event is free and open to the public and the co-chairs are Beverly Levy and Judy Sklarz.
"As a cancer patient, I know the importance of genetic testing and we've matched up two likely organizations, to which I'm connected, to sponsor this program," Levy said. "Jewish organizations like Women's Philanthropy of the New Haven Jewish Federation are spreading the word about genetic testing because Jews of Eastern European decent have a higher incidence of the BRCA gene mutation than other populations. And Discovery to Cure co-sponsoring the event is a 'natural.' They are one of the most renowned research units in the world on gynecological cancers and are right here at Yale." The increased risks of BRCA gene carriers for breast (men and women), ovarian, prostate and pancreatic cancers will also be covered.
"We have come a long way from the time cancer was whispered about as the 'big C,'" Levy continued. "One hope for this symposium is to encourage women to be tested and to bring the cost of genetic testing down to make it more affordable. Women with a specific family history of gynecological cancers will face more immediate and difficult health decisions and may be able to have their insurance company cover the $3,500 price tag."
"Those of us in our 50s and 60s know someone is diagnosed with some kind of cancer all the time, many of them gynecological ones," Sklarz said. "But they don't get the recognition or the research dollars that are vital. My diagnosis of uterine cancer felt like a rite of passage, like 'This is my turn.' I wanted to be involved in this event to support Beverly and encourage ways to identify these cancers a lot earlier."
For Kate Downey Berges, a photographer from Branford, the cause is also quite personal. She will speak about the voyage she and her three sisters took when they discovered that they were BRCA 1 positive from their father's side of the family. That news hit them minutes before two of the sisters of Irish descent were diagnosed: one with breast cancer, and one with ovarian cancer. Her moving and courageous story may prompt you to examine your family history, both maternal and paternal.
Through the candidness of one of the most beautiful women in the world and her medical announcement, Angelina Jolie is truly having an effect and empowering women to be educated. A walk to raise money for all gynecological cancers is planned for Sunday, Oct. 27 on the Yale University campus, with sign-in starting at 10 a.m. at Woolsey Hall on the corners of Grove and College Streets A leisurely two mile walk, starting and ending on the Yale Commons, will focus on sight-seeing with Yale University guides, and include free parking, door prizes, snacks, fun and a great cause.
Congresswoman Rosa DeLauro, herself a 27 year ovarian cancer survivor, is the honorary chair of the walk and will cut the ribbon officially opening the walk and give some remarks.
For her part, Levy is focused on finding new ways to help recognize, treat and prevent cancer through fundraising to support research.
"It's just not good enough that doctors find cancers like my ovarian cancer by accident," she said. "It is the fifth leading cause among cancer deaths for women and there are virtually no early warning signs. While undergoing chemotherapy, I am pouring my energy into fundraising to help the doctors and researchers at Yale develop early detection screening tests so they can find cancers like mine in the early stages when they are most curable and to find more and better treatments for women who are battling gynecologic cancers. We are hoping that people will join us for this great event to help fight back against cancer and enjoy a beautiful stroll on a fall day through the Yale University campus."
Gather your family and friends, make a team and help raise money for research and testing. Go to http://DTCNewHavenWalk.kintera.org for more information. Pre-registration is encouraged.
Donations can also be sent to: Office of Development, Yale School of Medicine/Discovery to Cure Walkathon c/o Joy Carrigan, P.O. Box 7611, New Haven, CT 06519, or call: 203-415-5555
Read more!
For actress, author and activist Angelina Jolie, beauty is a trademark as much as her talents on stage and screen, her relationship with Brad Pitt and the children they share and her philanthropic projects for refugees. Today she has a new distinction, known simply as the Angelina Jolie Effect - her pro-active response to the threat of breast cancer and ovarian cancer and her decision to undergo a preventive double mastectomy as well as her announced plans to have her ovaries removed.
To celebrate her decision and to educate all women and men about women's cancers, the public is invited to a symposium "The Angelina Jolie Effect: What Every Woman Should Know About Her Genetics" on Thursday, October 3 at 7 p.m. at the Jewish Community Center, 360 Amity Road, Woodbridge.
As an inspiration to encourage women to take a proactive stance on their health, Jolie had undergone BRCA gene testing and discovered she had an 87 percent risk of developing breast cancer as well as a 44 percent chance of developing ovarian cancer. Her mother, grandmother and aunt died of breast or ovarian cancer, all at a young age.
Because of her mastectomy, her risks were lowered to less than 5 percent. Her decision to go public in May 2013 opened a free flowing discussion on this sensitive topic.
A panel of medical experts from the Yale University School of Medicine will include: James J. Farrell, M.D., Director, Yale Center for Pancreatic Diseases, Associate Professor of Medicine, Section of Digestive Diseases; Erin Wysong Hofstatter, M.D., Assistant Professor of Medicine,Breast Cancer Program; Ellen T. Matloff, M.S., C.G.C., Director, Cancer Genetic Counseling,Yale Cancer Center; and Elena Ratner, M.D., Assistant Professor of Obstetrics, Gynecology, and Reproductive Sciences.
Pre-registration is required to egroves@jewishnewhaven.org or www.jewishnewhaven.org. The event is free and open to the public and the co-chairs are Beverly Levy and Judy Sklarz.
"As a cancer patient, I know the importance of genetic testing and we've matched up two likely organizations, to which I'm connected, to sponsor this program," Levy said. "Jewish organizations like Women's Philanthropy of the New Haven Jewish Federation are spreading the word about genetic testing because Jews of Eastern European decent have a higher incidence of the BRCA gene mutation than other populations. And Discovery to Cure co-sponsoring the event is a 'natural.' They are one of the most renowned research units in the world on gynecological cancers and are right here at Yale." The increased risks of BRCA gene carriers for breast (men and women), ovarian, prostate and pancreatic cancers will also be covered.
"We have come a long way from the time cancer was whispered about as the 'big C,'" Levy continued. "One hope for this symposium is to encourage women to be tested and to bring the cost of genetic testing down to make it more affordable. Women with a specific family history of gynecological cancers will face more immediate and difficult health decisions and may be able to have their insurance company cover the $3,500 price tag."
"Those of us in our 50s and 60s know someone is diagnosed with some kind of cancer all the time, many of them gynecological ones," Sklarz said. "But they don't get the recognition or the research dollars that are vital. My diagnosis of uterine cancer felt like a rite of passage, like 'This is my turn.' I wanted to be involved in this event to support Beverly and encourage ways to identify these cancers a lot earlier."
For Kate Downey Berges, a photographer from Branford, the cause is also quite personal. She will speak about the voyage she and her three sisters took when they discovered that they were BRCA 1 positive from their father's side of the family. That news hit them minutes before two of the sisters of Irish descent were diagnosed: one with breast cancer, and one with ovarian cancer. Her moving and courageous story may prompt you to examine your family history, both maternal and paternal.
Through the candidness of one of the most beautiful women in the world and her medical announcement, Angelina Jolie is truly having an effect and empowering women to be educated. A walk to raise money for all gynecological cancers is planned for Sunday, Oct. 27 on the Yale University campus, with sign-in starting at 10 a.m. at Woolsey Hall on the corners of Grove and College Streets A leisurely two mile walk, starting and ending on the Yale Commons, will focus on sight-seeing with Yale University guides, and include free parking, door prizes, snacks, fun and a great cause.
Congresswoman Rosa DeLauro, herself a 27 year ovarian cancer survivor, is the honorary chair of the walk and will cut the ribbon officially opening the walk and give some remarks.
For her part, Levy is focused on finding new ways to help recognize, treat and prevent cancer through fundraising to support research.
"It's just not good enough that doctors find cancers like my ovarian cancer by accident," she said. "It is the fifth leading cause among cancer deaths for women and there are virtually no early warning signs. While undergoing chemotherapy, I am pouring my energy into fundraising to help the doctors and researchers at Yale develop early detection screening tests so they can find cancers like mine in the early stages when they are most curable and to find more and better treatments for women who are battling gynecologic cancers. We are hoping that people will join us for this great event to help fight back against cancer and enjoy a beautiful stroll on a fall day through the Yale University campus."
Gather your family and friends, make a team and help raise money for research and testing. Go to http://DTCNewHavenWalk.kintera.org for more information. Pre-registration is encouraged.
Donations can also be sent to: Office of Development, Yale School of Medicine/Discovery to Cure Walkathon c/o Joy Carrigan, P.O. Box 7611, New Haven, CT 06519, or call: 203-415-5555
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Monday, September 23, 2013
Buy Your Tickets for ArtBra Now!
ArtBra New Haven will hold its 3rd annual live runway auction of art bras and other fine artwork on Sunday October 6, 2013, from 2:00 – 5:00PM at the Omni Hotel in New Haven, CT. Proceeds will benefit under- and uninsured patients at The Breast Center at Smilow Cancer Hospital. Doors open at 1:30, tickets are $50 and include a lavish English-style afternoon tea.
ArtBra New Haven empowers breast cancer patients to push back at the disease. This unusual take on art therapy provides a creative outlet for the emotions of cancer patients and survivors. Executive Director Gaye Hyre, herself a survivor, created the organization three years ago because “I felt the need to thank my medical team and focus on giving back to the community that was giving me so much.”
WNPR’s own Bruce Barber will return as MC/Auctioneer. The auction (both runway and silent) features bras which survivors transform into fine art objects, beautiful to boisterous, and fun to fantastical. They are vibrant celebrations of survival and “Bronx cheers” at the disease, as well as bras as objets d’art. The creations are then modeled by survivors and their supporters. Attendees can take part in the fast and furious live runway auction and bid on items in the silent gallery.
Each year ArtBra New Haven honors a person who has made a significant contribution to the breast cancer community by advocacy or research. This year, Ellen Matloff, Director of the Yale Cancer Genetics Counseling Center is being honored. Ms. Matloff prevailed as the lead plaintiff in the Molecular Pathology v. Myriad Genetics case recently before the U. S. Supreme Court, which unanimously decided to void patents on BRCA genes.
Breast cancer philanthropy gets personal - ArtBra New Haven!!
To purchase tickets, make donations, or for more information, please visit www.artbra-newhaven.org.
Click here to see the original post from Elm City Beat
Read more!
ArtBra New Haven empowers breast cancer patients to push back at the disease. This unusual take on art therapy provides a creative outlet for the emotions of cancer patients and survivors. Executive Director Gaye Hyre, herself a survivor, created the organization three years ago because “I felt the need to thank my medical team and focus on giving back to the community that was giving me so much.”
WNPR’s own Bruce Barber will return as MC/Auctioneer. The auction (both runway and silent) features bras which survivors transform into fine art objects, beautiful to boisterous, and fun to fantastical. They are vibrant celebrations of survival and “Bronx cheers” at the disease, as well as bras as objets d’art. The creations are then modeled by survivors and their supporters. Attendees can take part in the fast and furious live runway auction and bid on items in the silent gallery.
Each year ArtBra New Haven honors a person who has made a significant contribution to the breast cancer community by advocacy or research. This year, Ellen Matloff, Director of the Yale Cancer Genetics Counseling Center is being honored. Ms. Matloff prevailed as the lead plaintiff in the Molecular Pathology v. Myriad Genetics case recently before the U. S. Supreme Court, which unanimously decided to void patents on BRCA genes.
Breast cancer philanthropy gets personal - ArtBra New Haven!!
To purchase tickets, make donations, or for more information, please visit www.artbra-newhaven.org.
Click here to see the original post from Elm City Beat
Read more!
Wednesday, September 11, 2013
Has Myriad Learned Their Lesson?
Several papers have demonstrated that most physicians do not have the time or knowledge to offer their own genetic counseling to patients. There are documented cases of patients being harmed by these practices (1,2) and physicians who have subsequently been sued for mismanaging these patients (3). Over the past 15 years, Myriad Genetics has directly targeted clinicians with little to no background in genetics and encouraged them to offer their own genetic testing, without counseling by a trained and certified professional (1,2,4). Myriad has been widely criticized for this and other practices that have contributed to adverse events for patients and lawsuits for clinicians. Has Myriad learned their lesson? Or do they continue to put both clinicians and patients at risk? The evidence below suggests the latter.
1. PracticeAdvisor
Myriad recently released PracticeAdvisor, an e-learning program aimed at training general physicians and their staff on how to "implement a simple and effective hereditary cancer risk assessment protocol… to achieve the cancer risk assessment standard of care". Myriad’s PracticeAdvisor attempts to convey that genetic testing is a simple and straightforward process and fails to capture several key aspects of the genetic counseling process, contributing to the belief that anybody can order a “simple” genetic test and provide the patient with a “simple” answer.
2. Targeting Mammography Technicians
Recent emails circulating in the field indicate that Myriad plans to target mammography technicians as appropriate providers to order BRCA1/2 testing. These technicians likely have even less training in genetics than the physicians and nurses Myriad has targeted in the past. This is once again dangerous both for patients, who risk undergoing unnecessary surveillance and surgery or having false reassurance that their cancer risk is not elevated, as well as mammography technicians who could face legal action if the testing, results and/or management are not handled correctly.
3. Panel Testing
Myriad is now offering ‘panel’ testing that includes many genes as part of a single test, including several rare genes (5). If mistakes were made when Myriad was offering genetic testing for BRCA1 and BRCA2 alone, imagine what will happen when physicians and/or mammo techs begin to order and interpret these complex panels. The genes included in Myriad’s panel testing may not have a clear course of action and could present a challenge for even the most seasoned genetics expert.
4. Patent Debate
Now that the SCOTUS has made it illegal to hold a patent on human genes, the market has burst wide open to allow companies other than Myriad Genetics to offer more comprehensive testing for BRCA1/2 at more affordable prices. While this is in the best interest of the patient and will allow greater access to care for a larger number of patients, Myriad has been suing these companies (6) in what appears to be an attempt to bully them into backing down from offering the test and/or drain their financial resources.
Some studies have shown that up to 30-40% of genetic tests are being ordered in error and are costing insurers millions in unnecessary healthcare dollars (7). To avoid such gross losses, some insurance providers are now joining in the fight to shift away from the practice of non-genetics specialists ordering genetic tests. For example, Cigna has just developed a Genetic Testing and Counseling Program that will require its customers to undergo genetic counseling by a certified genetic counselor or medical geneticist prior to having genetic testing (8). This program was developed in direct response to the high cost and adverse outcomes associated with genetic testing by non-genetics specialists.
So, has Myriad learned their lesson? It appears that the answer is no, and they continue to encourage non-genetics specialists to take on the increasingly challenging role of ordering and interpreting genetic tests, at the risk of both the patients and the well-meaning clinicians they recruit.
Niki Lovick, MS & Michelle Ernst, MS
1. Brierley, K.L., Blouch, E., Cogswell, W., Homer, J.P., Pencarinha, D., Stanislaw, C.L., Matloff, E.T. (2012). Adverse Events in Cancer Genetic Testing: Medical, Ethical, Legal, and Financial Implications. Cancer Journal, 18:303-309.
2. Brierley, K.L., Campfield, D., Ducaine, W., Dohany, L., Donenberg, T., Shannon, K., Schwartz, R., Matloff, E.T. (2010). Errors in delivery of cancer genetics services: implications for practice. Connecticut Medicine, 74(7):413-423.
3. Lindor. R.A.,Marchant, G.E., O’Connor, S.D. (2011). A review of medical malpractice claims related to clinical genetic testing. Journal of Clinical Oncology, 29(15_suppl): abstract 6073.
4. Matloff, E.T., Caplan, A. (2008).Direct to Confusion: Lessors Learned from Marketing BRCA Testing. The American Journal of Bioethics, 8(6):5-8.
5. Myriad Genetics. “Myriad Genetics Launches myRisk ™ Hereditary Cancer Panel.” Myriad Press Release. 5 Sep. 2013. Web. 6 Sep. 2013. <http://investor.myriad.com/releases.cfm>
6. Noonan, K.E. “Myriad Genetics Files Law Suit Against Ambry Genetics for Genetic Diagnostic Testing of BRCA Genes.” Patent Docs. 9 Jul. 2013. Web. 6. Sep. 2013. <http://www.patentdocs.org/2013/07/myriad-genetics-files-suit-against-ambry-genetics-for-genetic-diagnostic-testing-of-brca-genes.html>
7. White-paper-1-value-of-GCs-in-lab.pdf">Miller, C.E., Krautscheid, P., Baldwin, E.E., LaGrave, D., Openshaw, A., Hart, K., Tvrdik, T. “Value of Genetic Counselors in the Laboratory.” ARUP Laboratories. Mar. 2011. Web. 3 Sep. 2013. <www.aruplab.com/files/resources/genetics/White-paper-1-value-of-GCs-in-lab.pdf>
8. National Society of Genetic Counselors. “Genetic Counseling Program Gives Cigna Customers Increased Access to Genetic Counselors.” NSGC. 23 Jul. 2013. Web. 30 Aug. 2013. <www.nsgc.org/Portals/0/Media/Genetic%20Counseling%20Program%20Cigna.pdf>
Read more!
1. PracticeAdvisor
Myriad recently released PracticeAdvisor, an e-learning program aimed at training general physicians and their staff on how to "implement a simple and effective hereditary cancer risk assessment protocol… to achieve the cancer risk assessment standard of care". Myriad’s PracticeAdvisor attempts to convey that genetic testing is a simple and straightforward process and fails to capture several key aspects of the genetic counseling process, contributing to the belief that anybody can order a “simple” genetic test and provide the patient with a “simple” answer.
2. Targeting Mammography Technicians
Recent emails circulating in the field indicate that Myriad plans to target mammography technicians as appropriate providers to order BRCA1/2 testing. These technicians likely have even less training in genetics than the physicians and nurses Myriad has targeted in the past. This is once again dangerous both for patients, who risk undergoing unnecessary surveillance and surgery or having false reassurance that their cancer risk is not elevated, as well as mammography technicians who could face legal action if the testing, results and/or management are not handled correctly.
3. Panel Testing
Myriad is now offering ‘panel’ testing that includes many genes as part of a single test, including several rare genes (5). If mistakes were made when Myriad was offering genetic testing for BRCA1 and BRCA2 alone, imagine what will happen when physicians and/or mammo techs begin to order and interpret these complex panels. The genes included in Myriad’s panel testing may not have a clear course of action and could present a challenge for even the most seasoned genetics expert.
4. Patent Debate
Now that the SCOTUS has made it illegal to hold a patent on human genes, the market has burst wide open to allow companies other than Myriad Genetics to offer more comprehensive testing for BRCA1/2 at more affordable prices. While this is in the best interest of the patient and will allow greater access to care for a larger number of patients, Myriad has been suing these companies (6) in what appears to be an attempt to bully them into backing down from offering the test and/or drain their financial resources.
Some studies have shown that up to 30-40% of genetic tests are being ordered in error and are costing insurers millions in unnecessary healthcare dollars (7). To avoid such gross losses, some insurance providers are now joining in the fight to shift away from the practice of non-genetics specialists ordering genetic tests. For example, Cigna has just developed a Genetic Testing and Counseling Program that will require its customers to undergo genetic counseling by a certified genetic counselor or medical geneticist prior to having genetic testing (8). This program was developed in direct response to the high cost and adverse outcomes associated with genetic testing by non-genetics specialists.
So, has Myriad learned their lesson? It appears that the answer is no, and they continue to encourage non-genetics specialists to take on the increasingly challenging role of ordering and interpreting genetic tests, at the risk of both the patients and the well-meaning clinicians they recruit.
Niki Lovick, MS & Michelle Ernst, MS
1. Brierley, K.L., Blouch, E., Cogswell, W., Homer, J.P., Pencarinha, D., Stanislaw, C.L., Matloff, E.T. (2012). Adverse Events in Cancer Genetic Testing: Medical, Ethical, Legal, and Financial Implications. Cancer Journal, 18:303-309.
2. Brierley, K.L., Campfield, D., Ducaine, W., Dohany, L., Donenberg, T., Shannon, K., Schwartz, R., Matloff, E.T. (2010). Errors in delivery of cancer genetics services: implications for practice. Connecticut Medicine, 74(7):413-423.
3. Lindor. R.A.,Marchant, G.E., O’Connor, S.D. (2011). A review of medical malpractice claims related to clinical genetic testing. Journal of Clinical Oncology, 29(15_suppl): abstract 6073.
4. Matloff, E.T., Caplan, A. (2008).Direct to Confusion: Lessors Learned from Marketing BRCA Testing. The American Journal of Bioethics, 8(6):5-8.
5. Myriad Genetics. “Myriad Genetics Launches myRisk ™ Hereditary Cancer Panel.” Myriad Press Release. 5 Sep. 2013. Web. 6 Sep. 2013. <http://investor.myriad.com/releases.cfm>
6. Noonan, K.E. “Myriad Genetics Files Law Suit Against Ambry Genetics for Genetic Diagnostic Testing of BRCA Genes.” Patent Docs. 9 Jul. 2013. Web. 6. Sep. 2013. <http://www.patentdocs.org/2013/07/myriad-genetics-files-suit-against-ambry-genetics-for-genetic-diagnostic-testing-of-brca-genes.html>
7. White-paper-1-value-of-GCs-in-lab.pdf">Miller, C.E., Krautscheid, P., Baldwin, E.E., LaGrave, D., Openshaw, A., Hart, K., Tvrdik, T. “Value of Genetic Counselors in the Laboratory.” ARUP Laboratories. Mar. 2011. Web. 3 Sep. 2013. <www.aruplab.com/files/resources/genetics/White-paper-1-value-of-GCs-in-lab.pdf>
8. National Society of Genetic Counselors. “Genetic Counseling Program Gives Cigna Customers Increased Access to Genetic Counselors.” NSGC. 23 Jul. 2013. Web. 30 Aug. 2013. <www.nsgc.org/Portals/0/Media/Genetic%20Counseling%20Program%20Cigna.pdf>
Read more!
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