2023 Li-Fraumeni Syndrome Awareness Day Online Gathering + LFS Trivia

The LFS community came together for our third annual online gatherings on LFS Awareness Day March 20, 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.

This year we marked the 47th birth anniversary of Living LFS founder Jennifer Mallory, shared heartfelt stories, played a rousing game of LFS trivia, and participated in a Q&A.

We also expressed our gratitude for all of the donors that made possible $1,000 LFS Hardship Grants for 38 families and individuals in need:
- Special thanks to our generous anonymous donor, who funded $1,000 grants directly to 11 families with children with LFS this year. Since Li-Fraumeni Syndrome Awareness Month was established in 2021, this donor has given over $31,000 to LFS families in need, and we couldn't be more grateful 💙
- Thanks to Barb and Craig Kirkpatrick for donating $5,000 toward LFS Hardship Grants for their third year in a row
- Thanks to the Addie Brady Foundation for funding five $1,000 grants for a second year in a row
- Thanks to all those who wished happy birthday to Living LFS board members Greg Harper (March 19) and Inge Vandormael (March 23) by donating nearly $8,000 combined to their Facebook birthday fundraisers for LFS Hardship Grants!
- The LFS community also helped their own by purchasing and showing off their LFS Awareness Day 2023 t-shirts on March 20th! Designed by artist and Living LFS board member Inge Vandormael, and printed and sold by Living LFS founding member Trishia Shelly-Stephens' Snarky Cancer, proceeds from t-shirt sales funded a $1,000 LFS Hardship Grant. You can still order t-shirts and other Living LFS merchandise to support the next round of LFS Hardship Grants, to be awarded on October 5, 2023: https://www.snarkycancer.com/c....ollections/living-lf
- And thanks to every single donor, who contributes anything from $5.30 to $530, for making it possible for Living LFS to provide LFS Hardship Grants twice a year to those with LFS who really need the help!

Visit www.LFSawareness.com to learn more.

00:00 - Intro & happy birthday Greg!
01:14 - 38 LFS Hardship Grants - awarded to everyone who applied!
01:36 - Trish's Beautifully Twisted coffee mug
02:08 - Hardship Grant thanks from Emily
03:30 - Amber and Walter say hello
04:12 - Hardship Grant thanks from Nancy
05:04 - Emily's radiation brain
05:53 - Remembering Jennifer Mallory: Andi's memories
07:10 - Trish's memories of our Mutant Mama
10:28 - Inge's memories of Jen
11:40 - Mills thanks Jen Mallory's family: Roberta, Tom, and Kathy
12:26 - Greg's memories of Jen
13:26 - Andi's goal: to walk in Jen Mallory's footsteps of support for the community
14:26 - Shout out to Lisa, Living LFS social media manager
15:53 - Li-Fraumeni Syndrome Trivia
16:16 - What does LFS stand for? (Li-Fraumeni syndrome)
16:43 - Who are the two physicians for whom LFS was named? (Dr. Frederick Pei Lis & Dr. Joseph F. Fraumeni, Jr.)
17:54 - LFS was originally known as SBLA syndrome, after four common cancers observed in the condition. What are they? (sarcoma, breast, leukemia, adrenal gland)
19:08 - LFS is caused by a mutation in which gene? (TP53)
19:36 - What is the name of the protein that is affected by the mutation in LFS? (p53)
20:06 - If a parent has LFS, what is the chance their child will have LFS? (50%)
20:28 - What percentage of LFS cancers occur before the age of 30? (50%)
20:50 - What imaging technique is often used to screen for cancer in individuals with LFS? (whole body MRI, magnetic resonance imaging)
21:30 - Why is MRI used instead of PET, CT or other imaging? (No radiation in MRI - individuals with LFS have a higher risk of developing cancer from radiation)
22:06 - What animal has become a symbol of hope for the LFS community? (the elephant)
22:33 - What do elephants have that makes them so special? (They have 20 copies of TP53, a tumor suppressor gene which keeps them from developing so much cancer. Humans only have two copies of TP53, one from each parent. Those with LFS only have one fully functioning copy of TP53)
24:05 - Q&A - more on elephants and their incidence of cancer
25:40 - Bill and Eleanor, newcomers to the LFS community, ask about kidney transplant, sarcoma, and more
32:19 - The PROMPT and LiFT UP LFS studies
36:35 - The EDISYN floating tumor DNA study
37:40 - Over $115,000 total in LFS Hardship Grants awarded since 2021
40:18 - The George Pantziarka TP53 Trust in the UK #WearBlueForLFS
41:00 - LFS Spectrum: Different Presentation of TP53 Variants and Mosaics: https://www.youtube.com/watch?v=mVD3QgIJblg
41:53 - The George Pantziarka TP53 Trust UK Conference in September, 2023
42: 23 - LFS Adults-Only Nashville Getaway November 2-5, 2023
43:54 - Thanks and goodbye
44:27 - Final question from Sabin, a new LFS community member from Switzerland, regarding the Toronto Protocol

• Category

  Li-Fraumeni Syndrome