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Li-Fraumeni Syndrome Association (LFSA) provides a wide range of information, advocacy, and support services for individuals and families with Li-Fraumeni Syndrome. We support a consortium of researchers, medical providers, and caregivers to further research and promote optimal care for the LFS community.

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    It is with heavy hearts that we learn that Dr. Fred Li, co-discoverer of the Li-Fraumeni Syndrome, passed away. As noted by Dr. Joseph Fraumeni, Dr. Li had a truly remarkable career, emerging as a leader in the field of cancer epidemiology, genetics, and prevention. The LFS Association keeps Dr. Li and his wonderful wife Continue Reading

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    Frederick Pei Li, MD passed away in Brookline on June 12, 2015. Born in Canton, China in 1940, he was the son of Han Hun Li and Chu Fang Wu. His father, General Li, fought the Japanese during the Sino-Japanese war. His mother Chu Fang Wu, organized schools and orphanages for thousands of war widows Continue Reading

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    Monday, June 29, 2015 Speaker: Dr. Walter C. Willett, MD, MPH, DrPH, of the Dana-Farber/Harvard Cancer Center Presentation Disclaimer: All of the information and materials contained in this presentation, and all materials on the LFSAssociation.org website, are intended for general medical and health information and educational purposes only, and are not in any way intended Continue Reading

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  • 09/01/15--14:13: Join Us Friday, October 2nd
  • Join us Friday, October 2 at 6pm! Stonington Vineyards Stonington, CT 523 Taugwonk Rd Stonington, Connecticut 06378 Come join us for an evening of wine tasting, dinner, acknowledgments and awards, in support of LFS research and outreach at the scenic Stonington Vineyards. Click to Read More About Lou Merloni Lou Merloni, emcee for the night Continue Reading

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    Dr. David Malkin and his team of researchers at The Hospital for Sick Children (aka, “SickKids”) will receive $2.2 million over the next three years. The team has been working to find better ways to predict the type and age of onset of cancer in patients with LFS. Their ultimate goals are to develop a Continue Reading

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    The Center for Cancer Research, National Cancer Institute, is in their final phase of their Metformin study and is still accepting participants. Metformin is currently being studied in over sixty clinical trials of cancers including breast, colon, and uterine cancer, among others. This is the first study in patients with Li-Fraumeni Syndrome investigating the effects Continue Reading

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    After the loss of his family to LFS, Michael James celebrates the life he had with daughter, Dolly. Mr. James continues his fight and support by raising awareness of LFS and the LFS Association. Read more.

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    PBS aired an eight-minute segment on Dr. Joshua Schiffman’s work with elephants, their 40 copies of p53, and how they respond to radiation, which was described as, “much more robustly.” How does elephant p53 work in humans? A Li-Fraumeni syndrome family is featured, along with their hopes. Researchers may have clinical studies established within three Continue Reading

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    SPECIAL REQUEST TO OUR INTERNATIONAL LFS COMMUNITY!  The LFS Association is launching a “Faces of LFS” campaign and is currently seeking submissions of “everyday life” of LFS families. They can be of family or individual activities, head shots, candid shots, etc. – inspiring photographs that “put faces to LFS” for the medial research community, potential Continue Reading

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    Officially released today! Myriad Genetics – Understanding Hereditary Cancer in the Era of Multi-Gene Panel Testing. Given the speed of technological advancements in the prevention and treatment of cancer, it can be difficult for patients and advocates to stay up to speed on the latest information. The LFS Association believes that our collaboration with our Continue Reading

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    The cancer predisposition revolution How was the inherited basis of cancer foreshadowed? By David Malkin, Judy E. Garber, Louise C. Strong, Stephen H. Friend Click here to download the article.

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  • 08/25/17--08:02: Giving Tuesday
  • Donations matter!! On this Giving Tuesday, the LFS Association gave funds which will support LFS cancer research and early detection screenings for children with LFS enrolled in the Pediatric Whole Body MRI Study at the Dana Farber Cancer Institute (DFCI). We graciously thank you for your continued support!! (Photo: from left to right, portrait of

    The post Giving Tuesday appeared first on Li-Fraumeni Syndrome Association.


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  • 08/26/17--07:57: Rare Disease Day at NCI
  • Treasured LFSA volunteer Kathleen Higgins greets LFSA Medical Board Advisor Dr. Sharon Savage of NCI’s Division of Cancer Epidemiology and Genetics here at Rare Disease Day at NCI in Bethesda, Maryland!  

    The post Rare Disease Day at NCI appeared first on Li-Fraumeni Syndrome Association.


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  • 08/27/17--07:49: Advocacy Matters!
  • Advocacy Matters! March 1st wrapped up our last day of Rare Disease Week on Capitol Hill. Can you find Kathleen Higgins in this photo? She is the champ still “shouting” for LFS awareness!

    The post Advocacy Matters! appeared first on Li-Fraumeni Syndrome Association.


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  • 08/28/17--07:20: Pampering Pets for the LFSA
  • Pampering pets for the LFSA!  Jordan and Mackenzie are two amazing young ladies who have chosen to raise funds for the LFS Association in honor of their dear friend, Fran, through a terrific initiative called Kid Boost!  Though their ongoing dog walking and grooming activities are based in Georgia, you can still support their efforts

    The post Pampering Pets for the LFSA appeared first on Li-Fraumeni Syndrome Association.


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    Saturday, March 18th, 2017, LFS survivor Chiky Fernandez promoted LFS awareness at Palmer Trinity School’s International Festival Open to the public, the school’s “signature event” celebrates Miami’s multicultural community and student initiatives, such as Chiky’s “Cancer Club!”   Thank you, Chiky, for all that you’ve done and continue to represent – you are quite the role

    The post Palmer Trinity School’s International Festival Open appeared first on Li-Fraumeni Syndrome Association.


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    In April, your LFS Association brought awareness to the thousands and thousands attending the American Association for Cancer Research Annual Meeting 2017 in WDC, with the assistance of ace volunteer Margie Menendez Fernandez and volunteer board member Holly Fraumeni!

    The post American Association for Cancer Research Annual Meeting 2017 appeared first on Li-Fraumeni Syndrome Association.


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  • 08/31/17--10:55: Summer Camp
  • Because of the wonderful support provided by our donors this past year, the LFS Association has been able to provide three camp sponsorships, potentially earmarked for LFS children, to Special Love’s hallmark program, Camp Fantastic!* Camp Fantastic, located in Front Royal, Virginia, offers children who are within three years of cancer treatment an opportunity for

    The post Summer Camp appeared first on Li-Fraumeni Syndrome Association.


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    On Saturday, April 8th, two of our LFS Association volunteers, Family and Patient Support committee member Stephanie Kudriashova and board member Debbie Soprano, spoke at the 2nd Annual Cancer Genetic Counseling Conference held at Dana-Faber Cancer Institute in Boston for 150 genetic counselors from all over New England!  Note the beautiful #FacesOfLFS – from left

    The post 2nd Annual Cancer Genetic Counseling Conference appeared first on Li-Fraumeni Syndrome Association.


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