Announcing DFC’s 2019 Grant Awards 

DFC donates $100,000 to research this year!

We are thrilled to formally announce The Desmoid Tumor Foundation of Canada Grant Awards* for 2019.  $50,000 was awarded to a study at Ghent University in Belgium and $50,000 to a study at Stanford University in the US.

Specifically, these grants have been awarded to the following research:

 Kris Vleminckx, Ph.D., Ghent University, “Identifying targets for therapy in a novel genetic Xenopus model for desmoid tumor formation.” Jointly funded by The DTRF and The Desmoid Tumour Foundation of Canada.

Gerlinde Wernig, MD, Stanford School of Medicine, “c-Jun-inducible mice, to study the pathomechanism of desmoid-type fibromatosis in vivo with particular attention to the role of b-catening/wnt and Notch pathways.”, Year 2. Jointly funded by The DTRF and The Desmoid Tumour Foundation of Canada.

Unfortunately, no Canadian researchers applied for Grants this year for Desmoid research but we will encourage them to apply for next year.

*Grant awards listed are contingent upon mutually satisfactory grant agreements. 

Other Grants that were awarded by the DTRF (US organization) to help find a cure for Desmoids include:

Jesse Boehm, Ph.D., Associate Director of the Cancer Program, Director of the Cancer Cell Line Factory, Principal Investigator in the Cancer Model Development Center, Institute Scientist, The Broad Institute of MIT and Harvard, “Using Genome-scale CRISPR screening to create a Desmoid Tumor Dependency Map.”

Paul Huang, Ph.D., The Institute of Cancer Research, London, UK, “Characterizing the Desmoid Tumour matrisome for biomarker and drug target discovery.”

Fariba Navid, MD and Aaron Weiss, DO, Children’s Hospital Los Angeles, “Patient Reported Outcomes (PROs) in Pediatric Patients with Desmoid Tumor Treated on ARST1921: A Children’s Oncology Group Study Evaluating the Safety, Pharmacokinetic and Efficacy of a γ-Secretase Inhibitor, Nirogacestat (PF-03084014).”

Daniela Segat, Ph.D., ”Mauro Baschirotto” Institute for Rare Diseases – B.I.R.D. Foundation, “CRISPR/Cas9 approach for creating a simplified cellular model to study the Desmoid cells phenotype in response to external stimuli.”

To mark this exciting announcement, please consider sharing this news and/or making a donation today! Thanks to your generosity we are one step closer to finding a cure!

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Third Annual DFC Fundraising Event struck just the right chord! We raised over $100,000 for research initiatives. 

The third annual DFC fundraising event, Play it forward for a Cure, held on May 2, definitely put the fun into FUNdraising!! With the Burlington/Hamilton band Slow Monday, warming up the crowd with favourite cover hits, followed by headliner and show stopper, Canadian Blues singer Shakura S’Aida, the evening was full of great energy. Adding to the excitement was the silent auction, fast-paced live auction, great food and drinks, all in a private Toronto venue, Revival Bar.

Between sets, we were fortunate to have Dr. Abda Gupta, one of Canada’s top Desmoid expert’s talk of the importance of research and ongoing support for this very rare and debilitating disease. Also, our patient ambassador William Redmond bravely spoke about his courageous battle with his Desmoid Tumour. Thanks to the work of our president and Founder of the DFC, Nancy Croitoru and the dedicated volunteer committee, this event struck just the right chord, topping 270 guests and raising just over $100,000 for research. Thank you to all who participated and donated to our event! Stay tuned as to where our donations will go this year!

On that NOTE… it is not too late for you to give and help us reach our target of $100,000!! Your investment in our mission to fund research for a cure and provide a framework for support for those suffering from this horrible disease is vital.

Please join the chorus and DONATE HERE!


We donated $85,000 to research initiatives in 2018!

Research Funding – Sorafenib

The DFC team is pleased to announce, that money raised from our Second Annual DFC Fundraising Event on May 3rd, 2018, has been used to fund leading edge research focused on a targeted drug treatment called Sorafenib, for desmoid tumours.

The medical advisory panel reviewed three different proposals and unanimously decided to fund, “The role of the tumour microenvironment in S45F desmoid tumor chemotherapeutic resistance”, by Dr. Raphael E. Pollock at Ohio State University.

Thanks to your generous support, we have funded $85,000 CDN.

Dr. Pollock’s abstract below is very exciting because through his research we will better understand why Sorafenib works in desmoids.

Another Sorafenib Desmoid Tumour Study, has been named by ASCO as one of the top breakthroughs in Oncology in 2018. Named as an “Advance of the Year”, the desmoid study is showcased with others showing “major breakthroughs in clinical cancer research and care.”  We are clearly on the right track funding work on this important drug for desmoid tumours.

Desmoid tumours are locally aggressive, painful and extremely debilitating, even causing mortality in afflicted patients. While the anti-tumour activity of Sorafenib has been clinically demonstrated in DT patients, the mechanism of action is not fully understood, which makes it more difficult to identify which patients may derive benefit from this drug. Interestingly, preliminary studies have shown that the type of mutation may make a difference in the drugs therapeutic effect. Specifically, desmoids harboring the CTNNB1 S45F mutation appeared to be more tolerant of Sorafenib, as compared to desmoid tumour’s harboring the T41A/S45P or wild type CTnnB1. Also, the mechanism of cell death in response to Sorafenib differs between these types of desmoids.

In the first aim of this grant, the researchers will investigate the mutational differences between desmoids and their differing responses to Sorafenib. We hope this study will result in important findings that can positively impact the management of patients burdened with desmoid tumours.


The Desmoid Tumour Foundation of Canada (DFC) is a registered Canadian charity dedicated to funding research for a cure for desmoid tumours. DFC was founded in 2016, motivated by a personal connection to the disease. Thanks to the benefits of research underway through the US foundation DTRF, we have seen improvements but there is more to be done.

Our goal in Canada is to raise funds for research as well as to provide a framework for a support network for those affected. The DFC is the only Canadian foundation dedicated to funding desmoid tumour research and finding a cure for this rare disease.

Research seeks to determine what goes wrong in cells to generate these tumours, what medical and surgical options work best, and what existing drugs or potential new drugs could provide effective treatments.

DFC supports the collaboration between researchers from different institutions to expedite the development of a cure. Discoveries made through desmoid tumor research can also potentially be applied to many other kinds of cancers.

BREAKING NEWS

Phase III Sorafenib Desmoid Tumor Study

We are thrilled to announce that the recent Phase III Sorafenib Desmoid Tumor Study, has been named by ASCO as one of the top breakthroughs in Oncology in 2018. Named as an “Advance of the Year”, the desmoid study is showcased with others showing “major breakthroughs in clinical cancer research and care.”

The American Society of Clinical Oncology is the world’s leading professional organization of researchers and clinicians who treat people who have cancer. Per ASCO, “rare cancers account for approximately 20% of all cancers diagnosed each year, and incidence rates vary worldwide. Progress has historically lagged behind the achievements made in more common cancers; however, five major studies this past year [including the Sorafenib Desmoid study] offer significant steps forward, making this a notable year for advances in rare cancers.”

We congratulate DTRF Scientific Advisor, Dr. Mrinal Gounder, for his leadership as Principal Investigator of the trial.

Read more in ASCO Special Article: http://ascopubs.org/doi/10.1200/JCO.18.02037

The Sorafenib study has also been highlighted in Conquer Cancer – https://www.conquer.org/advancing-clinical-research

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