At first there was MDJunction- a web based support group forum for just about any medical condition you could imagine. There you can find a group for Li Fraumeni Syndrome, the first of its kind, and for quite awhile the only of its kind. Moderated by John Berkeley who went on to be president of LFSA, many finally found a place to discuss the many problems and issues, heartaches and worries associated with LFS. MDJunction is organized by threads which is useful if you want to check out previous discussions on a specific topic such experts in sarcomas or risk of ovarian cancer. The MDJunction Support Group is still active but be aware that many posts can be viewed publicly.
Then came Facebook. Social networking meets Social Support. A place where friends could hang out and also a place where groups could meet and discuss their concerns. It is a diverse community of those fighting against the hereditary cancer demons. We share times of scanxiety, the sadness and anger of new diagnoses and mutual joy when tests are clear. We remember those we've lost and help newcomers through the complex labyrinth that comes with Living LFS. The biggest glitch here is, it's Facebook. One has to be a member of Facebook to participate as well as request to join the group. The group is set to private so only members of the group can see the discussions. A big benefit is that someone is always around and there are people from all over the world and many different languages so if you are up in the middle of the night with scanxiety, someone somewhere is probably up too and willing to lend support. The discussions are difficult to search on Facebook, so that is a downside.
As the LFS family grew, we realized that many times the needs of those with LFS and support are different than those who don't have LFS and out of respect for the very complex nature of families, a new group was born- a place for families and friends who do not have LFS but wish to find and help others who are in a similar situation. LFS does not just affect those with the mutation, it affects everyone who experiences the stress and heartache living with cancer touches.
GEORGE PANTZIARKA TP53 TRUST
In the UK, there is an informational website and forum started in honor of a young man named George Pantziarka who had LFS. The George Pantziarka TP53 Trust has excellent resources and continues to raise funds for TP53 research in the UK. The forum here is similar to MDJunction but is dedicated entirely to LFS. Pan Pantziarka moderates and is very good about staying in contact and keeping it up to date.
The Li Fraumeni Syndrome Association(LFSA) was formed after the 2010 NIH LFS Conference. LFSA hopes to be the bridge between patients, clinicians and researchers. There is a forum available on the LFSA website and it does see activity. It is public as well and has a contact link to reach out to someone who understands but response time does seem to lag a bit. The LFSA site offers periodic webinars, which are catalogued for later viewing and are good resources. LFSA helped organize the conference at Dana Farber in 2013 which was a fabulous opportunity to learn more about LFS and connect with others Living LFS.