LFS Hardship Grants

Living with Li-Fraumeni syndrome (LFS) can be financially devastating to a family. Extensive annual surveillance to detect cancer as early as possible when it is most treatable, specialized treatments and equipment should LFS cancers occur, and long distance travel to cancer centers – it all adds up. Insurance may not cover enough – or any – of the costs for care. The continual “cancering” that plagues these families often results in extended periods of lost wages, leaving them to choose between paying monthly bills or managing cancer.

To help LFS families defray these steep costs, in 2021 Living LFS established the LFS Hardship Grant program. Grants are awarded twice a year: every LFS Awareness Day, March 20, and October 5 in  honor of Living LFS founder Jennifer Mallory (March 20, 1976 – October 5, 2020).

Applications will be accepted for the next round of LFS Hardship Grants beginning February 6, 2025.

Sign up for our mailing list for updates. Help us help more LFS families: Donate.

Our Impact

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LFS Hardship Grants Awarded
$ 0
Dollars Awarded

2024

66 LFS Hardship Grants Awarded – $66,000 Total

October 2024

Pledged: (10) $1,000 grants – $10,000 total

Awarded: (16) $1,000 grants – $16,000 total! 

– 9 in honor of Living LFS founder Jennifer Mallory
– 4 for brain tumor patients, donated by family and friends in honor of Emily Parise
– 2 from Snarky Cancer for young sarcoma patients in honor of Tre Shelly
– 1 donated by Barbara Mills in honor of her family

March 2024

Pledged: (10) $1,000 grants – $10,000 total

Awarded: (50) $1,000 grants – $50,000 total! 
($21,000 paid directly to 21 applicants by an anonymous donor!)

2023

47 LFS Hardship Grants Awarded – $47,000 total

October 2023

Pledged: (5) $1,000 grants – $5,000 total
Awarded: (9) $1,000 grants – $9,000 total!

 

March 2023

Pledged: (10) $1,000 grants – $10,000 total

Awarded: (38) $1,000 grants – $38,000 total! 
($11,000 paid directly to 11 applicants by an anonymous donor!)

2022

41 LFS Hardship Grants Awarded – $41,000 Total

October 2022

Pledged: (5) $1,000 grants – $5,000 total

Awarded: (10) $1,000 grants – $10,000 total! Read more details

 

March 2022

Pledged: (12) $1,000 grants – $12,000 total

Awarded: (31) $1,000 grants – $31,000 total!
($9,000 paid directly to 9 applicants by an anonymous donor!)

2021

52 LFS Hardship Grants Awarded – $36,320 Total

October 2021

Pledged: (5) $2,000 grants – $10,000 total

Awarded: (9) grants – $13,530 total! Read more details

 

March 2021

Pledged: (10) $530 grants – $5,300 total

Awarded: (43) $530 grants – $22,790 total!
($11,660 paid directly to 22 applicants by an anonymous donor!)
Scotty& Noah

Grant Recipients

Alexis J.
Alexis J.
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When my 19 month old was diagnosed with adrenal cancer in May of 2023 I was heartbroken. Shortly after, his 3 year old brother was also diagnosed with adrenal cancer. My world felt like it was falling apart. Genetic testing confirmed that my boys had LFS. I could not wrap my mind around the diagnosis. A resource manager at Boston Children’s Hospital informed me about Living LFS and I quickly began scrubbing their website for information on my boys genetic mutation. I suddenly felt connected to a community that understood me. Living LFS began posting about a financial hardship grant which seemingly could not have come at a better time. My boys were receiving chemotherapy an hour from home and we were driving hours back and forth nearly everyday for a year for treatments and hospitalizations. My husband and I had to leave ours jobs as it was impossible to work while juggling intense chemo for both toddlers. It felt like we were alone and drowning. I’ll never forget buying my boys their winter coats with that grant and being able to take care of a few bills that were thrown our way during the course of traveling for treatment. LivingLFS.org is where I find myself hunting for facts, statistics and hope. I search out stories of other families who have been impacted and read how they have continue to thrive despite having cancer, surviving cancer or a new term I learned through this organization, previving cancer. Thank you so much to this incredible organization that has been a resource to my family in many ways. Thank you for providing statistics and bringing the LFS community together. The impact you all have had on my families lives has been immense. The boys currently have no evidence of disease and we are PRAYING we will beat this long term.
Karen B.
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Thank you so much, Living LFS, for this hardship grant! I literally received the call the same day I had traveled four hours for my first full body MRI and had to pay $895 out of pocket. My son is getting better everyday and I am just starting this journey after my diagnosis of breast cancer. I cannot thank you enough for your support. It is beyond appreciated.
Kristin R.
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I am a recipient of one of Fall $2000 LFS Hardship Grants. I applied because I was at a point where the hardships that we were experiencing really started to affect my ability to focus on the things that are really important, and that is each day my son is here and healthy. Even though we are struggling with health again, receiving this grant is such a blessing and something that I will never forget because now I can take a breath, and focus on my child and his health rather than having the weight of the expenses on my shoulders. When you are in a true hardship, one that affects you to the core. The receipt of a blessing such as this grant is one that will be cherished and remembered always. What a tremendous way to recognize those that struggle with this LFS and the trials and tribulations that they go through by helping when it is least expected. Without the support of livinglfs.org and the Li-Fraumeni Facebook support group I would be completely lost navigating this LFS world I call my normal. God bless and thank you so very much from the bottom of mine and my son's heart
Tameka Y.
Tameka Y.
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The Living LFS community has been such a blessing for me and my family. With their financial assistance I was able to pay for utilities, transportation, and medical bills/medicine. They also provide vital information for the community as well! We are grateful for their love, support and compassion. Cancer sucks but Living LFS is Love!!!
Rebecca G.
Rebecca G.
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Christopher and Joshua are now four and six years old. Both were diagnosed with Li-Fraumeni after their father tested positive for the genetic variant. No amount of preparation or prayer can build you up for the emotional breakdown you endure as a parent knowing what your future may hold with an unknown variable like this. In the beginning you think, “well, it’s only a 50% childhood risk, right?”. Well, through the use of early screenings and the protocol set forth for LFS, Joshua, 18 months at the time, was diagnosed with a rare form of rhabdomyosarcoma in his leg. I was a pediatric oncology nurse at the time, and I immediately thought either 1) he wouldn’t make it to Christmas or 2) he would lose his leg. It’s what I had seen time and time again at the bedside as worst case scenarios unfolded before my eyes. To my shock, Joshua held strong throughout chemo. He maintained his weight, kept his counts, and warded off infection time and time again. Through the generosity of donors, Living LFS reached out to us amidst our storm in the middle of his treatment during Christmas with a financial gift. This gift helped supplement the work I missed to hold my sons hand during chemo, to help bridge the house payments to pay the hospital instead, and to bring a little extra joy to Joshua and his brother at Christmas. Joshua is now two years in remission and has a new little brother, Lucas. We can never repay the generosity showed to us from Living LFS, but we know that this journey we are on is far from over. Christopher, Joshua, and their daddy still have an annual date for their MRIs with bi-annual labs and ultrasounds. It has so sadly become a part of our lives, and there is not a day that goes by that it does not weigh on my heart. We are so grateful to Living LFS for bearing some of that weight for us.
Alyssa G.
Alyssa G.
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My name is Alyssa, I was diagnosed with LFS after several of my family members also discovered they have LFS. My mother passed very young from breast cancer and the list of others affected in my family just seems to grow. I have been lucky enough to not yet have a cancer diagnosis but have had a few suspicious things that had to be tested. Now with the diagnosis I am able to keep up on my care and catch anything before it is too late! When I received my grant I was able to use it towards medical expenses like my medical bills. While being a step ahead by testing is great, it is also expensive and now I am starting to plan for a double mastectomy so anything helps. Living LFS and this grant has been a blessing to not only myself but many others. I am glad to have a community to share my story with. With the help I received I am able to even just a moment forget about the LFS and cancer and live my life the best I can.
Ann M.
Ann M.
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I have been the lucky recipient of two hardship grants from Living LFS. Both times that I received the grant, it felt like it was at a moment where I was praying for a miracle to happen for my finances, and then I was awarded the grants which helped me out with my medical bills. I am forever grateful for Living LFS and the community that has been built to support other people that understand the financial stress associated with ongoing screening. Thank you, Living LFS!
Amber M.
Amber M.
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Thank you Living LFS for all that you do and for helping our family. When you are living with LFS it is a life long journey of medical appointments and expenses. The travel expenses to appointments, parking fees and everything in between add up so quickly. Through Living LFS we have found a community to connect with and travel along with us in this journey. We are so thankful for you and helping our LFS family. My youngest son of 4 children spends so much time at appointments and in school receiving therapies. We enjoy the moments of laughter and play in between the chaos.
Hailey W.
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When I got pregnant with my now 1 year old, life just started to unfold in ways that I never thought would be “my life”. I found out that myself and my baby had LFS and this took me down a path of cancer and surgery after being the girl who always said “that won’t happen to me”. Thank you to Living LFS for gifting me and my little guy this grant during this time where life seems to have been nothing but downfalls. Getting a call last night that we would be receiving this grant had me crying. I haven’t been able to work between surgery and 3 different types of cancer just in the last year. I can not express how grateful and blessed I feel. Thank you. Thank you a million times. I hope you know how you truly help others by doing this. You are a blessing.
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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 to Living LFS. This is just a partial list.

Special thanks to an anonymous donor who has funded well over $50,000 in LFS Hardship Grants, paid directly to applicants.

We cannot thank you enough. 

Addie Brady Foundation
HerGen Foundation
Duane Hastings
Mary Pat Hastings
Bill & Eleanor Wilson
Judi Heitz
Valerie Pettijohn
Snarky Cancer
Wren Valley Apparel
Rachel & Philip Mondy
Debbie Leanne Photo
Susan Frary
Karen Stivers
Brenda Courtney
Greg Harper
Trishia Shelly-Stephens
Inge Vandormael
Phil Mallory
Lisa Wickens
Sparklerific
Andi Last
Ginny Davis
Robyn Hamilton
Lon & Linda Humpert
Laurie Weaver Quadracci
Ilonka Dee
Emily Carriveau
Nancy Lehman
Maureen Gelches
Aaron Bandstra
Kate Fritzsche
Phyllis Scroggie

Connie Bowe
Kellie Scroggie
Nina Christina
Wendy Kohlmann
Monica King-Fontenot
Melissa Laplante
Carly Grant
Tori Klein
Joshua C Hubbard
Shana Ramesh
Louis Hudon
Kelly Agbay
Eric Larsen
Eni Bica
Carl Birdman Myers
Georgia Cook
Dan Alosco
Claire DeMaio
Dottie Collins-Guy
Ana Paulina
Debbie Harper
Erinne Matte-Daniels
Ben Collins
Brooke Clay
Patricia Reed
Katerina Papoutsis
Craig Kirkpatrick
Barb Kirkpatrick
Anne Bauer Peytavin
Casey Ford
Jennifer Mills
Barbara Goetke Mills
Laura Kostura
Angie Robinson
Joe Cardia
Lisa Nahill
Michelle Potter
Cindy Shankar
Janis Williams
Becki Dunton
Michael Moody
Lisa Havens
Dan Moody
Rollie Hinckley
Nathan Ducharme
Nicole Razar
Steven Heffer
Jamie Razar
Danielle Blacet-Hyden
Laurie Henry
Art & Millie Moody
Emily Mehus