KEEP ON TUCKIN'
NEWSLETTER
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Click on the ribbon to read
"A Mother's Story"
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Tucker Davis
FCF Founder
1981 - 2010
(Click on photo)
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WE NEED YOUR HELP!
ANNOUNCING FCF'S OPEN ACCESS BIOBANK FOR COLLECTION OF TISSUE, ASCITES
AND BLOOD
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WHY CHOOSE THE FCF BIOBANK?
- FCF is proud to have funded 18 extraordinarily talented research institutions since our founding in 2009 – all focused on the curing of fibrolamellar. To continue their work, these labs need access to biospecimens such as ascites fluid, live tumor tissue, and biopsies. And this is where you, as a fibrolamellar patient, can make a huge contribution to the advancement of the science of FLC research. It is your tissue and your ascites that is needed for study. An open-access biobank is one in which tissue is available to many research institutions.
- Please see FCF's Biobank Fact Sheet for more information. If you are having an upcoming surgery or draining ascites fluid, please contact our patient navigator, Tom Stockwell.
- Click on the button below
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2017 Summit Highlights a Final Review
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Incredible collaboration and information sharing of published and unpublished research data amongst the 20+ institutions represented, was a centerpiece of FCF’s hosted summit last November. Importantly a “roadmap” for future FLC research was created and launched, already producing results for our community.
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The Faces of Fibrolamellar Research
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Amy K. Kim, M.D.
Johns Hopkins University
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Sofia Novais de Oliveira Ph.D.
University of Wisconsin
Madison
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Immunotherapy and FLC
FCF is partnering with the prestigious Cancer Research Institute to specifically focus on the role immunotherapy may have in creating curative therapies. Four P.h.D and M.D fellows are currently being funded at Johns Hopkins, University of California San Francisco, University of Washington and University of Wisconsin and making great strides forward.
CLICK ON PHOTOS FOR PERSONAL BIO'S
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Kevin M. Sullivan, M.D.
University of Washington
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Kevin Barry, Ph.D.
University of California
San Francisco
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Meet Drs. Julien Sage Ph.D and Garry Coles Ph.D
Stanford University
Drs. Sage and Coles are developing innovative fibrolamellar research models and signaling networks to accelerate curative discoveries. Learn more about their work by clicking the
link below.
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What is new and important in cancer research,
particularly FLC?
Three researchers from FCF November 2017 Summit share their thoughts.
In their videos, both Dr. Sethupathy and Dr. Scott focus on the central theme of requiring tissue to move research forward. Dr. Jill O'Donnell-Tormey focuses on the exciting growth of immunotherapy and rare cancers.
CLICK ON EACH PICTURE TO WATCH THEIR VIDEO
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Dr. Praveen Sethupathy, Ph.D
Cornell University
Department of Biomedical Sciences
Associate Professor
SETHUPATHY LAB
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Dr. John D. Scott, Ph.D
Howard Hughes Medical Institute
Department of Pharmacology
University of Washington
School of Medicine, Seattle
Edwin G. Krebs - Speights Professor of Cell Signaling and Cancer Biology
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Jill O’Donnell-Tormey, Ph.D
Cancer Research Institute
CEO & Director of Scientific Affairs
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A MESSAGE FROM TOM STOCKWELL
FCF PATIENT NAVIGATOR
Over the last nine months since becoming the official patient navigator, I have met an amazing group of fighters and their families. I am always impressed and inspired by their attitude and spirit. During this time I have also met the dedicated researchers who are working hard each day to discover a cure. I am here to help in anyway I can, for example, suggesting helpful resources for treatments and clinical trials.
Click on my picture
to view my video dealing with the relevance of statistics based on the ever changing therapeutic environment. Please reach out to me anytime with questions or comments on how I can serve you and our community better. Call me directly at 760-333-2699 or email me at t
stockwell@fibrofoundation.org
"KEEP ON TUCKIN"
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The National Cancer Institute offers consultation and treatment to patients
(click picture to view video)
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Dr. Tim Greten is a Senior Investigator and Head of the Gastrointestinal Malignancy Section, Thoracic and Gastrointestinal Oncology Branch at the National Cancer Institute–Center for Cancer Research. Dr. Greten offers fibrolamellar patients free consultation, including transportation costs to the NIH in Washington, DC, and access to
various clinical trials and studies that his department is spearheading.
Call or email
Tom
, FCF
patient navigator for more detailed information about this program.
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FCF President, John Hopper, interviews FCF Patient Navigator Tom Stockwell about his son Robert's fibrolamellar journey.
(click picture to view video )
- Initial response to diagnosis
- Creating a game plan to begin the fight
- Important tips for FLC caregivers and patients
Note, MJ Hennessey has produced these informative interviews via
Cure Connections
– a leading oncology magazine and
Rare Disease Report.
MJ Hennessey and FCF have formed a strategic alliance to create a video series.
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2018 FCF Patient & Family Gathering
Friday Sept 7 – Sunday Sept 9, 2018
Lake Mansfield Trout Club
Stowe, Vermont
The Lake Mansfield Trout Club in Stowe, Vermont is a cozy, rustic lodge with plenty of spaces for conversation, walking trails and hearty fare. The gathering will start with cocktails and dinner Friday evening at 5:00pm and run through Sunday breakfast. Activities at the Trout Club include hiking, fishing, canoeing, and swimming along with exploring the charming town of Stowe. The Trout Club is approximately 45 minutes from the Burlington, VT airport.
The Davis family will take care of transportation to and from the Burlington airport and all Trout Club expenses (room and board)…you just need to get yourselves to Burlington, VT.
FCF considers gathering patients and families to be part of our mission as knowing each other and being together brings strength and support to the group. Space is limited.
If you would like to attend, please contact lomalley@fibrofoundation.org
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The fibrolamellar community is fortunate to have very involved patients and caregivers. The following two patients are great examples of the help we can give to one another.
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Meet Carina
Carina has been a fibro fighter for over two years. Sharing of information between patients and families is so important. Carina is offering her tips to help ease the journey of others.
Read Carina's tips on pain management and appointment scheduling.
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Introducing Lacey
Lacey is an 18 year old from California, diagnosed with fibrolamellar two and a half years ago. Please listen to the podcast interview of Lacey and her mom Joy, about Lacey's challenges and resilience in her cancer journey.
To listen to the podcast, click on Lacey's photo.
- If you, or someone you know, would like to share a personal story, let us know (here).
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A Community of Support
A diagnosis of fibrolamellar hepatocellular carcinoma is difficult, not just because of the seriousness of the disease, but also because of its rarity. A Facebook community of patients and families was formed to share and support each other. To join, go to
Fibrolamellars of the World Unite
.
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100% of all net donations fund
fibrolamellar research
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If you have an event that you'd like us to share, just let us know. Send the info
here
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Fibrolamellar Cancer Foundation
20 Horseneck Lane, 2nd Floor, Greenwich, CT 06830
203-340-7800
www.fibrofoundation.org
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We hope you find this communication tool interesting and useful.
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Disclaimer:
This newsletter does not provide medical advice, diagnosis, or treatment. All content made available on or through this newsletter is for informational and educational purposes only. (
terms & conditions
)
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