Patient Support & Advocacy
On November 2010, a workshop focusing on Li-Fraumeni Syndrome (LFS) was held at 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.
We here at Li-Fraumeni Syndrome Association 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 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 future initiatives at 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 in a personal setting.
- LFS family services, such as support camps.
Here is one place that you can begin your search for summer camps: Children’s Oncology Camping Association, International
- Private website discussion forum to share thoughts, questions and stories with others living with and affected by LFS.
- Grants and fundraising to support our future initiatives.
Please do not hesitate to contact us at firstname.lastname@example.org if you have any questions, suggestions or just want to reach out to someone who understands.