Patient Support & Advocacy - Li-Fraumeni Syndrome Association

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In November 2010, a workshop focusing on Li-Fraumeni syndrome (LFS) was held at the National Cancer Institute (NCI) of the National Institutes of Health (NIH) in Bethesda, Maryland. LFS patients and family members were brought together for the very first time, most of whom had no idea how to reach others living with LFS. Twelve of us assembled following the family advocacy session, exchanged contacts, and embarked on a mission. The mission is to bring families, researchers, and clinicians together, all of whom are interested in the understanding of LFS, to identify the best LFS treatments, LFS screening protocols, LFS advocacy & awareness, and hopefully some day, a cure for Li-Fraumeni syndrome.

Click here to view the webcast from the conference.

We here at Li-Fraumeni Syndrome Association (LFSA) are people like you; we wonder how one family could be plagued with so many genetic cancers. We have seen generation after generation affected by hereditary cancers, but only recently have we learned why. Through the LFSA, we hope to educate and raise awareness of this rare condition. Those with LFS have similar stories, but despite the rarity of this disease, the people who face it have a physical and a spiritual strength that is truly unique.

Examples of our past, current, and future initiatives at the LFSA include:

  • Research support that will directly impact the screenings and treatments of those with LFS.
  • Conference hosting for families to meet, support each other and share the most current LFS information presented by top international LFS researchers at our LFS Association Symposiums. Please reference our “News and Information” tab, and click on “Conferences.”
  • Youth Programs, such as our inaugural Youth Workshop held in Salt Lake City in August 2017.  Our second Youth Workshop was held August 2019 at the Dana-Farber Cancer Institute.  Please reference our Youth Program to register for updates and receive our Youth Newsletters (also available under the “News and Information” tab).
  • LFS family services, such as summer camp experiences
    Here is one place that you can begin your search for summer camps:  Children’s Oncology Camping Association, International
  • Exhibits at industry annual conferences to educate and spread awareness of LFS and the services of the LFS Association.
  • Educate US Senators, Congress, and other legislative staff on Capitol Hill regarding issues of concern for LFS patient families.
  • Provide webinars on various topics of interest for our LFS patient families by top investigators in their fields.  Reference our “Patient Support”  tab to access our past webinars.
  • Grants and fundraising to support our future initiatives.
  • In 2021, the National Cancer Institute co-sponsored our inaugural international LFS awareness day of May 3, 05/03, representing TP53, dedicated to our Founding Fathers, Drs. Frederick Li and Joseph Fraumeni.
  • Along with our partners at the National Cancer Institute and the LiFE consortium, we have initiated efforts to educate the insurance industry the benefits of wholebody MRIs.
  • We have established a model of international chapters co-chaired by a medical professional and LFS family member, along with a youth program coordinator.
  • We have established a Genetic Counseling Advisory Group who has worked tirelessly on providing services and products for the LFS community, to include Frequently Asked Questions (coming soon), Youth Awareness Brochure (coming soon), etc.
  • We have established a Medical Advisory Board comprised of the top LFS researchers and providers in the world.
  • We have also established a Scientific Advisory Board to encourage and support additional advancements in LFS research.

 

Know that we are also available on Instagram, LinkedIn, Facebook, and Twitter.  We also have a private, online patient support Facebook group, Voices of LFS.

Please do not hesitate to contact us at info@lfsassociation.org if you have any questions or suggestions, or if you just want to reach out to someone who understands, email connect@lfsassociation.org.