Talking to Kids About Li-Fraumeni Syndrome | Living LFS Webinar

WEBINAR: Talking to Kids About LFS

Thursday, October 28, 2021, 1pm Eastern, 10am Pacific, 1pm Eastern. Watch:

Geared toward parents of kids with Li-Fraumeni syndrome, this webinar covers the latest research on discussing hereditary cancer syndromes with children at all ages and stages, and includes tips and tricks for finding the right time, place and strategies for talking to children about LFS. Download the slides.

Presented by Dana-Farber Cancer Institute and Massachusetts General Hospital Genetic Counselors Jaclyn Schienda, ScM, CGC (Living LFS Medical Advisory Chair), and Carly Grant, MS, CGC, this webinar allowed attendees the opportunity to ask questions about how to talk to kids about LFS and to share their experiences with other parents. This webinar was hosted by Living LFS, a non-profit patient support organization with the mission to encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS.

Links mentioned in the webinar:

Robot Music and LFS and Living My Best booklet for kids 8-13 (scroll down to books section near the end of the page)

2022 Jennifer Mallory Living LFS Family Camp

Sign up for the Living LFS email list for the latest news and events

Join the Li-Fraumeni Syndrome Support Facebook Group (A private group only for those with LFS)

If you have more questions, please email Jackie Schienda at

Time markers:

00:00 - Introductions

03:30 - “What/how do I tell them?” 

Questions we hear from families

05:57 - To disclose or not to disclose?

Sharing with your kids information about genetic testing results, cancer risk, and LFS, the benefits of disclosure, and the harms of not telling

12:30 - Conversations about genetic risk: a 5-step model for parents

24:06 - Conversation tips

Child Cognitive Development and Genetics Language: 

29:04 - Talking to 2-4 year olds

31:33 - Talking to 5-10 year olds

33:16 - Talking to 11-13 year olds

36:32 - Talking to 14-18 year olds

39:09 - Helpful books, booklets, and resources

41:40 - Can’t my child just have testing (without talking about what it’s for?) 

45:57 - Take Aways

46:55 - Example from an LFS family

48:08 - References (available soon)

48:42 - Open Q&A and sharing experiences

49:13 - Is the risk of pediatric cancer still considered to be 40%?

51:33 - Regarding the link you provided above, can you further help with where to navigate to find the Robot Music book?

52:05 - no question but this is great. We recently started talking to our 2 year old as his cancer treatment was wrapping up and port removed. Helpful to see how to approach based on child development.

52:22 - Do any of these resources discuss additional testing when something is seen in a way that the kids may not be frightened?

54:55 - I agree, I think a webinar for kids & young adults would be great! I recently was diagnosed & shared that diagnosis with my 19 & 22 year olds. They were both tested & one was positive. We provided the results to both of them at same time. It seemed to be a good way to deliver the results.

55:12 - Is there a possibility of another webinar coming on a nutritional / holistic approach for preventing and beating cancers?

56:03 - thank you for the info. I was so desperate for this information years ago. I am thrilled to have access to this info! thanks so much

56:13 - Anyone with experiences with sharing with young (unaffected kids - meaning no cancer) and older unaffected kids?

56:48 - Very interesting and reassuring as I have always been open and honest with my kids who were 10 when I went through treatment and we all were tested. One problem we’re having is that only one has the mutation and sometimes feels it’s unfair - so any advice on sibling dynamics?

58:38 - Lisa shares her experiences with sibling dynamics

1:01:52 - Li-Fraumeni Syndrome Facebook Support Group

1:02:50 - Wrap up