Dear Friends of the LFSA,
It is my pleasure to share our first annual Impact Report with you. This report highlights the accomplishments of the LFSA in 2014 as we work to improve the lives of those with Li-Fraumeni Syndrome. We are achieving this by supporting the ambitious advancement of the scientific understanding of LFS, sharing information and connecting the LFS patient and research communities.
Thank you for sharing our vision and lending support to our organization and its efforts. This work would not be possible without each and every one of you. I would like to also take this opportunity to thank the LiFE Research Consortium for their ongoing commitment to collaborative research to improve the understanding of LFS and the care of those affected. With this collective investment we are unraveling the complexities of LFS and truly changing the futures of those individuals and families with this syndrome.
Please visit our website for updates on our progress. We are grateful for your support and I am excited and confident that our upward trajectory will continue in 2015.
Sincerely yours,
Dr. Robert Lufkin, LFSA Scientific/Medical Advisor
Grant Awards to Dr. Judy E. Garber
There is currently no standard method of screening individuals with a diagnosis of LFS, however an optimal screening tool is desirable to detect cancers at an early stage when they are more easily treated. Dana-Farber Cancer Institute has an open research protocol (screening with whole–body MRI for the detection of primary tumors in children and adults with LFS and other cancer predisposition syndromes) utilizing a relatively new medical technology called Whole Body Magnetic Resonance Imaging (WB-MRI) as a screening tool. Adult oncologist Dr. Judy E. Garber and pediatric oncologists Drs. Allison O’Neill and Lisa Diller are collaborating on this effort with radiologists Drs. Stephan D. Voss and Jyothi Jagannanthan. This Whole Body MRI allows doctors to examine the entire body with one non-radiating scan. Eliminating radiation (which is typically associated with PET and CT scans) is particularly beneficial for individuals with a high risk of cancer due to LFS. Over time, the research group hopes to learn more about whether this imaging modality is useful as a screening tool. Please contact the pediatric or adult oncology departments if you have any questions about this study or are interested in participating.
Grant Awards to Dr. Joshua Schiffman
The research supported by the Li-Fraumeni Syndrome Association (LFSA) will include several projects in Dr. Schiffman’s laboratory related to LFS and cancer risk. Specifically, Dr. Schiffman is working to develop a clinical test to measure the risk for developing cancer. This test can be applied to LFS family members and help to guide clinical screening for early tumor detection. In addition, Dr. Schiffman is studying elephants and the observed phenomenon that elephants rarely develop cancer (despite their very large body size). Dr. Schiffman’s laboratory is trying to understand the genetics behind cancer protection in elephants and how to apply this knowledge to children and families with LFS to prevent cancer.
Webinars
In 2014, we provided three patient education webinars that reached more than 300 community members. Webinars engaged and educated people about LFS on topics from nutrition to recent findings in LFS research.
“I would like to extend a heartfelt thank you to all of our LFS families, friends and healthcare providers. It is through this powerful collaboration that we have achieved great progress in 2014.”
~Jenn Perry, LFSA President
Conferences
LFSA serves as the voice for the LFS community through our engagement and participation in major medical conferences. In 2014, we delivered our key perspective to the broader medical community through presentations at two events.
Geo Demographics
Social Media
Website
the one hundred Award
On June 10, 2014, LFSA Scientific/Medical Advisor, Dr. Robert Lufkin, was honored by Massachusetts General Hospital Cancer Center’s “the one hundred” event. The event honors 100 researchers, caregivers, advocates and philanthropists who have dedicated themselves in the fight against cancer.
Virtual Walk
The LFS Community rallied around our LFSA Virtual Walk.
Margaritas Restaurant
In June 2014, LFSA friends and virtual walking team “Sea of Hope” hosted two fundraising and awareness initiatives at Margaritas Restaurant in Framingham, MA. A percentage of the restaurant’s sales went to LFSA, and more than 300 restaurant goers learned about LFS.
A Special Thank You to Our Champions
Our work at LFSA is only possible through the support of our donors and champions, who have facilitated the advancement of the LFS agenda beyond measure. We are indebted to Wilma and Don Sackett and all of our donors for their contributions.
“We are proud to support LFSA because we know their work is revolutionizing the understanding and treatment of LFS. We now have hope that the future of the children and grandchildren with LFS is bright.”
-Wilma and Don Sackett