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Dr. Frederick Pei Li, 1940-2015

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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

Dr. Frederick Pei Li Obituary

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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 and children. They emigrated to the US when Fred was 7 and opened a Chinese restaurant to support the family, much to the chagrin of their friends and colleagues who said they would “lose face” by opening a business. To the Li family’s credit, the China Garden Restaurant in White Plains NY became a huge success. All 5 children helped out but not one took over the business!!

When Fred was young, his father suffered from a serious head injury and his mother told him to leave high school at age 16 and enroll in college. Graduating from NYU, he then went to the University of Rochester Medical School. He was known for carrying his doctor’s black bag to parties where he’d take out soy sauce, black vinegar, Chinese wine, and cook dinner for friends. After his third year, he took a year to travel around the world, studying cholera and chlamydia trachomatis epidemics, discovering that good public health policies could cure more patients and have more influence than any one single individual physician.

After graduation, he looked for the most challenging public health problem, and eventually he found it in the War on Cancer. Joining the National Cancer Institute, he met Robert Miller and Joseph Fraumeni, two physician scientists among many other brilliant epidemiologists and physicians. He became a commissioned officer of the US Public Health Service, assigned to the Boston Field Station and the Dana-Farber Cancer Institute in the 1970’s.

It was working with Joseph Fraumeni, David Malkin, Steven Friend and Louise Strong that 20 years of observation and deduction led to the understanding and discovery of the Li-Fraumeni syndrome, a familial syndrome where there is a defect in the p53 tumor suppressor gene. Families with this autosomal dominant syndrome may have a risk of multiple cancers as high as 50%. New discoveries, treatment and prevention options for patients with this syndrome continue to evolve.

Fred also found time to be a family man. He was a generous husband; the first year of marriage, on a meager fellow’s salary, he paid the full tuition for his wife Elaine to go to medical school. Together, they raised 3 children, Andrew, Margaret and Irene, who, following in their paternal grandmother’s footsteps, recently opened a food truck and restaurant in Boston, serving Chinese-inspired food. He leaves 3 sisters, Virginia Li of Los Angeles, Angela Li-Scholz of Albany NY, and Tina Li of NYC, two grandchildren Jackson Frederick Li and Kira Elaine Tan and many nieces and nephews throughout the US and the world. He is predeceased by his brother Victor Li, Honolulu, HI.

Published by the Boston Globe, June 14, 2015.

Nutrition and Cancer with Dr. Walter Willett

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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 to be used as a substitute for professional medical advice, treatment or care. Persons who view this presentation are encouraged to discuss any and all of this information with their own physicians. Persons who view this presentation and/or visit the LFSAssociation.org site should in no way rely on any information provided for their own health needs. All specific medical questions which arise as a result of viewing this presentation or any information on the LFSAssociation.org site should be presented to your own physician for review.

Join Us Friday, October 2nd

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salute

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.

lou
Click to Read More About Lou Merloni

Lou Merloni, emcee for the night and former Major League Baseball player and WEEI Radio personality, will be helping us launch the LFSA Global Education and Awareness Campaign!

There will also be an awards ceremony including Lifetime Achievement Awards to Dr. Li and Dr. Fraumeni.

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Generously Sponsored by Dunkin Donuts Franchisees
Cary Gagnon
Michael Batista
Scott Fanning
Frank D’Andrea
Konse Skrivanos
Kelly Andrade
Peter Martins

DD

 

 

 

The Terry Fox Foundation provides $2.2 million dollar grant for the study of Li-Fraumeni syndrome!

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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 blood test that detects cancer earlier, and to identify treatments to prevent cancer from developing in patients who are at risk.

(09/16/2015) Read more.

Metformin Study for LFS Patients

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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 of Metformin in this special population.
  • Evidence from research studies suggests people with diabetes taking Metformin may have a reduced risk of developing, and dying from, cancer. Metformin has also been widely used in people without diabetes and is well tolerated with minimal side effects.
  • The study will require some travel to NIH in Bethesda, MD.
  • If you are interested in learning more about this study, please contact Dr. Farzana Walcott, Lead Associate Investigator at farzana.walcott@nih.gov or 240-276-7661. Further information can also be found on the NCI Clinical Center webpage and www.clinicaltrials.gov.

Coronado Man Celebrates Daughter’s Life After Losing Her to Li-Fraumeni Syndrome

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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.

PBS, LFS, and elephants: Elephant genes hold big hopes for cancer researchers.

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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 years.

See the video on PBS.org.
Read more on the research here.


LFSA launches “Faces of LFS” campaign!

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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 donors, and others, in promotion of LFS awareness. Digital photos can be forwarded to info@lfsassociation.org.  No names need to be associated with the images, but to know your country of origin would be interesting and beneficial – just let us know with your submission. Though this is an open-ended solicitation, we would need photos by April 17th to prepare images for display in time for the June conference.

Note: Please be aware that all photos, captions, and digital media submitted for the “Faces of LFS” campaign may be incorporated into print and/or digital material that may be distributed in connection with LFSA conferences, campaigns, mailings, and events. Entry of photos will be deemed consent for their use, at the discretion of the LFSA, in advertisements, publications, slideshows, and/or website for the purpose of promoting LFSA and spreading awareness for LFS.  

Thank you!  We look forwarded to the opportunity to share your photos!

Officially released! Myriad Genetics – Understanding Hereditary Cancer in the Era of Multi-Gene Panel Testing

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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 cancer advocacy peers in this “best practice” paper will serve to further educate patients, their families and providers on the importance of the hereditary link to cancer. Download the collaborative Best Practices Review and Recommendations here.

The cancer predisposition revolutionHow was the inherited basis of cancer foreshadowed?

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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.

Giving Tuesday

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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 Dr. Fred Li, LFSA board member Holly Fraumeni, DFCI’s Dr. Allison O’Neill, LFSA president Jenn Perry, and LFSA board member Debbie Soprano.)

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

Rare Disease Day at NCI

Advocacy Matters!

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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.

Pampering Pets for the LFSA

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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 right here in the link below!

www.kidsboost.org/kids-project/jordan-mackenzie/

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


Palmer Trinity School’s International Festival Open

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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 model!!

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

American Association for Cancer Research Annual Meeting 2017

Summer Camp

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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 a week’s worth of fun and normalcy! This summer’s camp dates are August 16th – 22nd. Dr. Stephen Chanock, the current director of NCI’s Division of Cancer Epidemiology and Genetics, volunteers and serves as the camp’s medical director each summer, along with other volunteer nurses, doctors, and supporting staff from the National Institutes of Health. Watch this video on the camp experience, as presented by Special Love’s CEO David Smith and the campers! (Learn more about Special Love and Camp Fantastic.)

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

5th Li-Fraumeni Syndrome Meeting

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Save the date!!

LFS Association President Jenn Perry has been invited to speak at the A.C. Camargo Cancer Center at their 5th Li-Fraumeni syndrome meeting of researchers and patient families. Please join us if you are in the Sao Paulo region of Brazil next Tuesday, May 2nd!  Dr. Maria Isabel Achatz, now of the National Cancer Institute, will be returning to speak at the event regarding her work with Li-Fraumeni syndrome families in the United States. Southern/southeastern Brazil has the largest concentration of LFS patients known.  Registration begins at 0800 hours.

The post 5th Li-Fraumeni Syndrome Meeting appeared first on Li-Fraumeni Syndrome Association.

2nd Annual Cancer Genetic Counseling Conference

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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 to right, LFS family Debbie, Lexi, Hayden, Stephanie, Jenn, and Samantha.  They are, with no doubt, “Love!”  That’s #LFSstrong!

 

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

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