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Li-Fraumeni Syndrome Awareness Day 2024

On Li-Fraumeni Syndrome Awareness Day, March 20, 2024, Nancy Lehman (75) and Tom Connolly (71) share their experiences and insight into living long with Li-Fraumeni syndrome. We celebrate Living LFS founder Jennifer Mallory's 48th birthday. We also talk about the Hope of Elephants with author Amanda Rawson Hill, and we come together as a community to ask each other questions and share our experiences. Excitingly, Living LFS was able to provide a record-breaking $50,000 in LFS Hardship Grants to families struggling with the costs of living with Li-Fraumeni syndrome! Thanks to our generous donors The Addie Brady Foundation, Mary Pat Hastings, The HerGen Foundation, Snarky Cancer, Barbara Mills, Inge Vandormael, the donors to Inge's and Greg Harper's birthday fundraisers on Facebook, and every individual donor from largest to smallest - it all makes a difference in the lives of those struggling with the costs LFS. We owe a special debt of gratitude to an anonymous donor who directly funded 21 of the 50 grant recipients on March 20. This LFS Awareness Day event was hosted by Living LFS, a 501(c)(3) non-profit 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. 00:00 - Intro 01:30 - Ice Breaker: Name, location, and unusual ability, if you have one 06:54 - Living Long With LFS: Nancy Lehman and Tom Connolly 07:43 - When did you learn you had LFS? 18:06 - How does Li-Fraumeni syndrome change how you deal with day to day issues? 21:02 - Is there anything you've done differently that you feel has extended your longevity, or do you think it's just luck? 23:29 - What advice do you have for people who have just learned they have Li-Fraumeni syndrome? 29:09 - How do approach managing care for teens who are frustrated about continual LFS screening? 36:33 - How do you decide about disclosing an LFS diagnosis in a work setting? 42:08 - Nancy's elephant collection and the importance of elephants to those with Li-Fraumeni syndrome 44:23 - LFS Hardship Grants, Spring 2024: A RECORD $50,000 awarded, thanks to our donors! 47:51 -- The George Pantziarka TP53 Trust (UK) and their upcoming events 48:41 - Active and upcoming studies for the LFS community 51:48 - Celebrating Jennifer Mallory on her 48th birthday 56:26 - Living LFS Jennifer Mallory Family Camp 57:42 - Flying Horse Farms, Mt. Gilead, OH - Family Camp location August 23-26, 2024 1:01:14 - More memories of Jennifer Mallory from Maureen Gelches 1:04:43 - The Hope of Elephants, a book by Amanda Rawson Hill 1:09:55 - LFS trivia for a copy of Amanda's book! 1:14:28 - How to manage a medical team that doesn't take LFS seriously 1:25:58 - What is a variant of uncertain significance in the TP53 gene? 1:27:55 - How long must you have colonoscopies and endoscopies with LFS? 1:29:01 - Deciding to get a bilateral mastectomy with LFS 1:32:32 - X-rays and radiation vs. Li-Fraumeni syndrome 1:44:07 - Final thoughts