Events Calendar

Participants in the 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.

The following calendar and list include key upcoming events sponsored either by FCF or one of our partner organizations.

  • Within the calendar, FCF-sponsored events that are open to patients and caregivers are displayed in green, while partner-sponsored events are displayed in orange. FCF events that are open only to researchers are displayed in red.
  • The list includes all FCF and partner-sponsored events for each month.

Jun 2021

How Immunotherapy is Reshaping Cancer Patient Survivorship Experiences – June 23, 2021 at 1:00 pm EDT - 2:00 pm EDT
Seeking a Cure: The Promise of Immunotherapy – June 24, 2021 at 7:00 pm EDT - 8:30 pm EDT
Living Rare, Living Stronger NORD Patient and Family Forum – June 26, 2021 - June 27, 2021 at 8:00 am EDT - 5:00 pm EDT

Jul 2021

Newly Diagnosed? Information for Fibrolamellar Patients and their Families – July 14, 2021 at 7:00 pm EDT - 8:30 pm EDT
Emotional Overload: The Impact of a Cancer Diagnosis – July 20, 2021 at 1:00 pm EDT - 2:30 pm EDT
Restorative Yoga for Stress Relief – July 22, 2021 at 1:00 pm EDT - 2:30 pm EDT

Aug 2021

Estate Planning – August 11, 2021 at 1:00 pm EDT - 2:30 pm EDT
What's Legal About Cancer – August 18, 2021 at 6:30 pm EDT - 8:00 pm EDT
Patient to Patient: A Fireside Chat – August 18, 2021 at 7:00 pm EDT - 8:00 pm EDT

Sep 2021

2021 Patient & Family Gathering – September 17, 2021 - September 19, 2021 at 3:00 pm EDT - 12:00 pm EDT

Oct 2021

2021 CRI Virtual Immunotherapy Patient Summit – October 7, 2021 - October 8, 2021 at 1:00 pm EDT - 5:30 pm EDT
Understanding Health Insurance – October 14, 2021 at 1:00 pm EDT - 2:30 pm EDT
New Horizons in Cellular Therapy: Harnessing Our Body's Natural Killer Cells to Fight Cancer – October 27, 2021 at 1:00 pm EDT - 2:00 pm EDT

Nov 2021

2021 Fibrolamellar Research Summit – November 1, 2021 - November 3, 2021 at 5:30 pm EDT - 12:00 pm EDT
Make Ahead Holiday Recipes That Nourish Your Body & Soul! – November 11, 2021 at 2:00 pm EST - 3:30 pm EST

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

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!

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, vast selection 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.

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.

Unfortunately, the September 2020 event 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. This year, we hope to have an in-person gathering in Stowe on September 17 – 19, 2021, pending the COVID-19 situation at that time. If its not possible to meet in person, we will hold another virtual gathering. Check back for more information!