FCF Events

Participants in first Patient & Family Gathering, 2012

Since Tucker Davis founded FCF in 2009, the organization has sponsored a wide range of events, including:

  • Fundraising events that have raised significant funds for fibrolamellar research
  • Community building events that have provided opportunities for patients and families to meet each other and share experiences and information
  • Educational and scientific events such as topical discussions for patients and families and annual scientific conferences for researchers in the field.

Key upcoming events on FCF’s calendar include:

Other important events for the fibrolamellar community held throughout the year include:

Annual Events

Stone Point Capital Golf Outing – Since 2009 Stone Point Capital’s annual charity golf tournament has dedicated the proceeds to FCF.  This is the largest source of funding at the Foundation.

NYC Marathon – For many of the years since the founding of FCF there have been runners in the New York City Marathon raising money for fibrolamellar live cancer. FCF runners are with Fred’s Team from Memorial Sloan-Kettering (MSKCC).  Fred Lebow was the co-founder of the NYC Marathon in 1970.  In 1990 Fred was diagnosed with brain cancer.  He was treated at MSK and jogged down the hospital hallways during his recovery. He ran the marathon for the last time in 1992 when his cancer was in remission finishing in 5 hours and 32 minutes.  Fred died in 1994.  Although part of Fred’s Team, all funds raised by FCF runners go directly to the Fibrolamellar Research Fund set up at MSKCC and are used only for fibrolamellar research.

Cycle for Survival happens each year in locations around the U.S.A. including  Boston, Chicago, Connecticut, Long Island, Los Angeles, Miami, New York City, San Francisco, New Jersey, and Washington, D.C. If you live anywhere near one of these places and want to raise money for FCF while getting exercise at the same time, please check out Cycle for Survival and then contact Lynn to let her know your plans.  Cycle for Survival is a Memorial Sloan-Kettering Cancer Center fundraiser for rare cancers but riders can designate the specific research they want funded through the event.

Free Fall to Fight Cancer – in honor of Zach Grullon. This amazing sky diving event, held in coordination with the US Army Golden Knights, honors Zach’s life has been held since 2012 with almost $70,000 raised in total.

Fibrolamellar Calendar – For many years there has been a calendar featuring fibrolamellar patients on their birthday months. The design, production and sales of the calendar was conceived and coordinated by Gail Trecosta, parent of patient Matthew (1999-2014.) The Foundation receives a portion of the sales from this calendar each year.

Cheers To Jay and Jump for Jay – The Alexander family has held events each year honoring their son Jay since his passing in 2011. Cheers To Jay was a fundraising event at a local bar. A Jumping for Jay skydiving event happens almost annually, and Jay’s sister ran in the NYC marathon.  The total from these events is well over $100,000! Thank you Alexanders for all you do for FCF!


Song written for FCF“The Light Inside” was written for FCF by Josh Panda.  The song is available on Apple Music and is featured on the Foundation’s video. Listen to it, love it, and talk about it! The Light Inside (feat. Mike Gordon, Adam Zimmon, & Steve Hadeka) – Single by Joshua Panda. The song is available on YouTube, Amazon Music and Spotify.

AmazonSmile is a simple and automatic way for you to support FCF when you shop on Amazon, at no cost to you.  smile.amazon.com has the same low prices, vastselection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization. Just choose FCF as your permanent charity of choice and donations will be automatic.

Autumn Smith, is a jewelry designer.  Please check out her websites at:
http://designsbyautumn.etsy.com and http://www.etsy.com/shop/StampingCancerOut .  Autumn donates 10% of all sales from the latter site and 10% in October (Liver Cancer Awareness Month) from her Designs by Autumn shop

The Patient and Family Gathering is a key event on the Foundation calendar. For the last five years this has been held in Stowe, VT at no cost to patients and families. It is a time for bonding and exchanging advice and information. It fulfills the Foundation’s mission to connect and support the fibrolamellar community of patients and their families.

The September 2020 event in Stowe had to be cancelled because of the COVID-19 pandemic. Click here to view the video recordings of the “Virtual Fall Gathering” held in its place.