LFS Events and Activities - Li-Fraumeni Syndrome Association
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.
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!
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!
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!!
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!
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!
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!
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.)
Our friend and LFS advocate, Kathleen Higgins speaks about the importance of genetic testing in detecting Li-Fraumeni syndrome in an interview for the Rare Disease Report. Thank you, Kathleen, for helping get the word out!!! (Published 09/30/2016)
The National Society of Genetic Counselors Annual Education Conference in Seattle wrapped up Friday evening (09/30/2016) with a fundraiser benefiting the LFS Association by Myriad Genetic Laboratories. The benefit was “a hit,” with a line wrapped around the sidewalk to attend! Thank you, Myriad, from the bottom of our genes!!!
Our volunteer board members, Vice President Susan Faulkner (center left) and Co-Founder/Marketing Chair Debbie Soprano (center right), are at the National Society of Genetic Counselors Annual Education conference in Seattle this September 2016 spreading awareness of LFS for you!! Go, Team LFSA!!!
Myriad Genetic Laboratories is co-sponsoring the 35th National Society of Genetic Counselors Annual Education Conference being held in Seattle, Washington, this week. Myriad will be presenting important new scientific data that will help genetic counselors. We are also thrilled that Myriad will be hosting an event to raise funds for several patient advocacy groups, to include the LFS Association!! Thank you, Myriad!!
Cookies matter!! Kneaders Bakery & Café (see locations) is donating 100% of all proceeds from the sale of sugar cookies in the shape of elephants to Dr. Joshua Schiffman’s research at the Huntsman Cancer Institute on elephants, cancer and the p53 tumor suppressor gene, throughout September. Even if you have no Kneaders near you, you can still donate to their cookie campaign against childhood cancers.
NBC Channel 7, San Diego: After the loss of his family to LFS, Michael James celebrates the life he had with daughter, Dolly. Thank you, Mr. James, for your continued fight and support by raising awareness of LFS and the LFS Association. Watch the news here: 01/23/2016.
Lauren, Chandler and Kirk Rhinehart are bicycling across the country in honor of Ashleigh Rhinehart. Read Ashleigh’s story here, and how she now feels empowered knowing about her LFS.
TitanTough21! This Saturday, October 17th, 2015, Dr. Joshua Schiffman will be the keynote speaker at the official launch event of the TitanTough21 Foundation for LFS! The event starts at 11:00 AM, MST, and although it will be held in Salt Lake City, Utah, you can watch the live WEBCAST at www.titantough21.org. Read more from ToughTitan21 chairman, James Everett: TitanTough21 – letter from the chairman
“Knock Out Genetic Cancer!!” Read about how Heather Henstock, Erin Livingstone, and Noelle & Greg Johnson raised funds for the LFSA by racing in the Boulder Sunset Sprint Triathlon! It was a grueling hot day, 95 degrees by the time they started, in fact – yet everyone, including Noelle, successfully completed the race strong, and at around two hours! You all are truly an inspiration in the fight against LFS – thank you!!!
UPDATE! This past August, children with cancer experienced another terrific week at Special Love’s hallmark, Camp Fantastic, in Front Royal, Virginia. Camp Fantastic is supported by the Pediatric Oncology Branch of the National Cancer Institute and is staffed by medical volunteers from NCI. Dr. Stephen Chanock, current director of the Division of Cancer Epidemiology and Genetics at NCI, has volunteered and served as the medical director of Camp Fantastic for the past few years. Your LFSA has also proudly been able to support Camp Fantastic this year with the sponsorship of three campers – children currently undergoing treatment for cancer. Watch the “music video” that Special Love produced from this summer’s week-long program and see all the smiles!!
A huge THANK YOU to Matt O’Neill and his Beantown Invitational Golf Tournament, and to Al Petrilli of the Marie C. Petrilli Cancer Research and Treatment Memorial Fund, for your very generous donation to the LFS Association in furtherance of LFS awareness, cancer research, and patient support! June 22nd, 2015, was a beautiful day at the Renaissance Country Club in Haverhill, MA, full of fun, great prizes, wonderful food and drinks, and big, big hearts!!
Kathy and James Higgins hosted a highly successful event in Waverly, NY, this past Saturday, celebrating the cherished lives of their daughters, Maureen and Kerry, while raising public awareness and media attention to the Li-Fraumeni Syndrome: “We’re just trying to let the public know that this is a problem out there and that if they feel that they are an unlucky cancer family, with a lot of cancer in their family, they may have a genetic trait that they may want to check into,” Kathy Higgins explained. View the coverage here! (06/20/2015 event)
More great news – we were able to do it again! Because of our wonderful supporters, the LFS Association has been able to provide additional camp sponsorships, potentially earmarked for LFS children, as well as LFS families! At The Hole in the Wall Gang Camp, children with all sorts of serious disorders get to celebrate both fun and normalcy during their spring, summer, and fall programs located in Ashford, Connecticut. Note that the camp offers special family weekends in both the spring and the fall, to include special weekends for oncology patients. In 1988, actor and philanthropist Paul Newman founded the camp under that premise “that every child, no matter their illness, could experience the transformational spirit and friendships that go hand-in-hand with camp.” We are very proud, and very humbled, to contribute to this mission. See the below link for more information about their weekend programs and learn more about the terrific opportunities offered!
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.)