Community Events - Li-Fraumeni Syndrome Association
Learn more about past LFS events and find out about any upcoming events!
Mo Songs for Kerry 2017
Learn more at mosongsforkerry.org.
Regional Bakery Starts Fundraising Campaign Throughout September for Childhood Cancer Awareness Month
Joshua Schiffman, M.D., of the Huntsman Cancer Institute at the University of Utah is leading groundbreaking research into elephant DNA that could unlock the cure for childhood cancer, and Kneaders Bakery & Café is working to help fund it with a month-long campaign taking place during the month of September, which is Childhood Cancer Awareness Month.
The campaign focuses on the sales of elephant-shaped sugar cookies, which will be available at all 52 Kneaders locations. 100% of the sales will be donated to Dr. Schiffman and his research. Customers will also be invited to make donations by rounding-up their total purchase to the nearest dollar amount or adding a specified dollar amount to their purchase. Donations can also be made on this site.
This funding is important, because the National Cancer Institute spends 96% of its research on adult cancers. There is a serious need to find funding for childhood cancer.
Every day, however, 43 children in America are diagnosed with cancer. Here at Kneaders, our family has lived through one of these diagnoses, and as childhood cancer survivors, we’re dedicated to helping find a cure.
Click here to learn more or make a donation!
Mo Songs for Kerry 2016
Learn more at mosongsforkerry.org.
TitanTough21 Foundation Launch Event
Dear Li-fraumeni Families,
My name is James D. Everett and I’m the Chairman of the Board of the TitanTough21 Foundation and also a father of two children with Li-fraumeni Syndrome. The reason I’m reaching out to you is that one year ago the TitanTough21 Foundation was formed. We are very excited to team up with other great charities that are working hard to directly fund LFS research and help LFS families that are in need of paying outstanding medical bills.
It has been a very good year for TitanTough21. We’ve made great progress putting all the pieces together and holding some great events. We are ready to go worldwide and help find a cure through our fundraising efforts.
TitanTough21 will be having an official launch event on Saturday, October, 17th 2015 at 11:00am MST in Salt Lake City, Utah. We are pleased to announce we will be having a live Webcast that will let you know what we’re all about. We’ll be having Dr. Joshua Schiffman as our keynote speaker. He will be sharing the latest medical research from the Schiffman Laboratories located inside the Huntsman Cancer Institute. In addition, you will get to meet and hear from Reagan Everett the founder of the TitanTough21 Foundation as well as our board members.
TitanTough21 can directly help your family find hope in what can be very troubling times as you deal with LFS first hand.
Just before the broadcast time please go to the TitanTough21 website www.titantough21.org and click on the “Live Broadcast” button to watch the stream.
I’ll be sharing with you how we can raise “Thousands of dollars” for LFS research.
The only way that a cure will happen is by having every LFS family come together. I look forward to presenting TitanTough21 to you and your family.
Much love and hope,
James D. Everett
james@titantough21.org
801.759.8761
Fight Li-Fraumeni Syndrome
Heather Henstock, Erin Livingstone, Noelle and Greg Johnson raced in the Boulder Sunset Sprint Triathlon, a half mile swim, 17 mile bike and 3.2 mile run. They were able to raise $2,600 for LFSA and raced in honor of their dear friend, Noelle Johnson, and others like her with Li-Fraumeni Syndrome, a rare inherited genetic cancer disorder that greatly increases the risk of developing cancer during their lifetime. Noelle (pictured at right with her training partner Kelly Kuppinger) battled her first sarcoma cancer at the age of 21. She’s since had nine surgeries in her fight to remain cancer free, including a double mastectomy, a full hysterectomy, and just last month a tumor was removed from her leg. Today at age 38, she is cancer free.
The Higgins Event
Kathy and James Higgins hosted a highly successful event in Waverly, NY on 6/20/15, 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, they may have a genetic trait that they may want to check into,” Kathy Higgens explained.
Accepting Applications for Camp Fantastic!
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.
Download the Camp Fantastic Application Cover Letter
Download the Camp Fantastic Application
LFSA Conference, San Diego – UPDATE
After such a great conference last year we have been all looking forward to our next conference slated for San Diego this October. We have been working with the LFS Consortium since the beginning of the year trying to schedule and plan the event but many of their schedules were not aligning with the genetics conference that would have brought them to San Diego this year. We are all disappointed by this change including the LFS Consortium members!
In lieu of the San Diego LFSA Conference, we are now working with the LFS Consortium to bring you a webcast with several of the key members for this October/November time frame. Please stay tuned and we will bring you upcoming details and information as soon as it reaches us.