Living with a genetic disease like Li-Fraumeni Syndrome (LFS) has devastating physical and emotional costs and losses. To add insult to injury, living with LFS can be really financially expensive too. Regular surveillance and monitoring to detect cancer as early as possible and treatments should cancer happen, potentially for multiple members of a household... it all adds up fast, and if you're in the United States, insurance may not cover all or enough of it.
Living LFS has long recognized the need to support the members of the LFS community who are struggling to deal with these costs. For the first ever Li-Fraumeni Syndrome Awareness Day, March 20, 2021, the Living LFS Board of Directors decided to award ten $530 grants to families dealing with financial hardships from living with Li-Fraumeni Syndrome.
We started with ten $530 LFS hardship grants. $5,300 total. When March 20, 2021 came, we were able to announce 43 grants were funded: $22,790 in LFS hardship grants, thanks to donors like you! Watch the LFS Awareness Day 2021 live events and donate to the next round of hardship grants.
Why LFS Hardship Grants?
Here are just a handful of the stories we've received from grant applicants:
"We have $20,000 in medical debt. I can’t get disability because I didn’t work enough to get enough credits… I’m asking for help so I can get my scans this year.... I would be very grateful for any assistance you could provide for me and ultimately for my family."
"I was first diagnosed with breast cancer in 2018 while being seven months pregnant... Only a year out from being "cancer free" (May 2020) I began to feel really dizzy... Then just two months later I had my annual full body MRI (since I have Li-Fraumeni) and they found a brain tumor... they found out it was a rare bone cancer called Ewing's Sarcoma... the ability for me to work from November 2020 to August of 2021 (as that is when chemo is supposed to end) is slim to none. So a grant would be so helpful for us to just help with the mortgage or electricity bills or groceries."
"I was devastated & extremely broken hearted that my daughter lost her battle with brain cancer in 2019 at 14 y/o. I just found out last year that I have stage 4 breast cancer that has metastasized to the bones and liver. I am in Texas right now going to MD Anderson (for treatment), but I live in Colorado…The worst part of it all is that I have not been able to afford a headstone for my daughter and this is something that I desperately really need to accomplish while I am still here."
LFS Hardship Grant Testimonials
The 2021 LFS hardship grants have started going out to grant recipients. Here are some of their reactions:
"Me and my daughters are Blessed Today we were recipients of the #LFS Grant we really appreciate it! God Is Good🙏🏾 God Bless all of Us #lifraumeniawareness March 20th"
"I want to thank the team who chose the recipients for the grant’s. I was not expecting it but I honestly had forgotten that I had applied. I want to thank you for the help, loosing my Disability income almost 2 years ago and having to panhandle to pay rent etc was very difficult… This will help greatly!!! I can imagine how hard it was to have to make decisions with the recipients. ❤️❤️❤️"
"My daughter was a blessed recipient of the LFS Grant! She is 6 years old. She was born on Christmas Day 2014 and 4 weeks later we found out she had Li Fraumeni. We have been so very blessed and fortunate to have clear test results every time. But the pain and torture she endures going through the test every 90 days, she deserves a special SPECIAL treat. And we are going to pass the blessings on to someone else 💙💚 Thank you so very much to our wonderful supportive LFS family. Our cup is always overflowing!"
"As a recipient of one of your grants provided by the anonymous donor specifically for children with LFS , I just want to say THANK YOU! My daughter Myah is currently on her 431st day of fighting osteosarcoma, her second cancer as an 11 year old. This grant is helping her Make-A-Wish be complete ( literally)! Let me explain. She had just recently been granted her "backyard makeover" Make-A-Wish ,but they were only able to partially give her what she asked for, because of covid, budget limitations, an no travel wishes being granted. Well LIVING LFS completed her backyard makeover wish! My kiddos will be getting their first backyard trampoline delivered next week! Yes, I know , I could use it for ALL the bills too...but when your child who lost her daddy to cancer, had cancer as a baby, and then again now....when she asked for a wish...this momma will do what she has to make it come true. Luckily for me, and by the grace of God, I also had LIVING LFS and the anonymous donor who helped make this wish come fully true. Not enough words to express my gratitude! God bless you!" - Yesenia
"Thank you thank you thank you!"
"Thank you for your consideration of my application, and for all you do for individuals seeking guidance from others who have experienced TP53 mutations."
"Thank you for thinking about us all!"
Why $530? Because of TP53
Why are the LFS hardship grants $530 USD? 53 is a special number in the LFS community: Li-Fraumeni Syndrome is caused by a mutation of the TP53 tumor suppressor gene. We offer $530 grants, we ask for $53 donations, and supporting businesses run "53" promotions to benefit the LFS community in order to highlight the importance of the TP53 gene. Sometimes called the “Guardian of the Genome,” TP53 is vital in preventing cancer from forming.
“Li-Fraumeni syndrome is a rare condition caused by a hereditary (germline) mutation in the TP53 tumor suppressor gene, often referred to as the guardian of the genome. Even though having LFS is rare, TP53 mutations occur in over 50% of cancers and have been reported in almost every type of cancer,” says Jaclyn Schienda, genetic counselor at Dana-Farber Cancer Institute. “If we can better understand LFS, we can better understand cancer.”
Our hope is that by making every March Li-Fraumeni Syndrome Awareness Month, and by marking Li-Fraumeni Syndrome Awareness Day every year on March 20th, the general public will come to understand the challenges of living with LFS, and that Li-Fraumeni syndrome will be recognized as vitally important in the fight against all cancer. We urge you to donate to Living LFS. Thank you for supporting the Li-Fraumeni Syndrome community.
With Gratitude to Our Donors
None of these LFS Hardship grants would have been possible if it wasn't for all of the people who donated. This is just a partial list. We cannot thank you enough.
Tangled Up in Bows
Rachel & Philip Mondy
Debbie Leanne Photo
Laurie Weaver Quadracci
Susan Peterson Frary
Anne Bauer Peytavin
Joshua C Hubbard
Carl Birdman Myers
Barbara Goetke Mills