Dear LFS Family,
We need your input on a new children’s book about Li-Fraumeni syndrome!
Providers, please forward this opportunity along to your families with young children.
The LFSA Genetic Counseling Advisory Group created a children’s book about LFS and need to know what you and your child think! We have an electronic copy of the book called ‘LFS & Living My Best!’ that we are asking families to read and answer questions about as a part of a research study.
Your child may participate in the study if they:
- Are 8-13 years old
- Speak English
- Either have LFS or have a close family member with LFS (i.e. their parent or sibling has LFS)
Participants are asked to do the following together:
- Read ‘LFS & Living My Best.’ While reading times vary, this may take about 45 minutes, including time for your child to do the activities in the book.
- Answer a short 10-minute survey after reading the book.
- Participate in a 10-20-minute phone interview (to be scheduled after filling out the survey).
Further details about the study and a link to the ‘LFS & Living My Best!’ book can be found here: https://kgi.co1.qualtrics.com/jfe/form/SV_7WpEJIEMxg2sHEp
If you would like further information, please contact researchers Isabella Brink at ibrink19@students.kgi.edu or (541) 490-6908 and Emily Quinn at Emily_Quinn@kgi.edu or (909) 607-6474.
Thank you!
Jenn Perry
LFS patient and mother