About Athina's Ride
Athina's Ride is a cycling event that starts with training rides on February 15th and culminates on July 9th with an epic ride where you can achieve the goal you set for yourself. Ride by yourself, with some friends or along with the Okanagan Granfondo ride. You can ride indoors on a trainer or outdoors (and manually log it, or use platforms like Strava to automatically upload your rides). You'll sign up, choose your distance, and start training anytime up until end of July.
Create an account, log your training distances, and then participate on Ride Weekend in one of four distances. By logging your distances and fundraising, you'll be eliglible for great incentives!
Meanwhile, 100% of the proceeds raised through fundraising will benefit the Desmoid Tumour Foundation of Canada.
My name is Athina Merckx and I have quite a unique story. I have a disease that affects 2 to 4 in 1 million people.
In February 2019 I noticed some pain in the back of my right knee after swim practice one day. I told my parents and they then noticed a large bump had formed on the back of my knee. I visited our family doctor and at first glance he thought it was likely a Baker’s cyst, but once he felt my leg, he knew that was not the case. I was then sent for an ultrasound, and later a biopsy. The following month doctors diagnosed me with Desmoid Fibromatosis. We consulted a doctor in Columbus, Ohio who recommended surgery, and we ultimately travelled to Columbus in April of that year. Thankfully, the surgery was successful with no complications and I was on the road to recovery, which was no walk in the park.
While recovering from surgery I developed CRPS, an incredibly painful neurological condition. This was the most painful thing I have ever felt, and it was all part of my recovery. As I began to recover the function of my leg, I started to get back to the things I loved like playing soccer and traveling. That's when one of my MRIs, that I get every three months, showed multiple tumours starting to grow back in my same leg. This time we opted for a form of chemotherapy, a port was put in my chest and I started chemo in November of 2019.
The day I started chemo was the scariest day of my life. While chemo is terrifying, the part that isn’t really talked about is how you feel every other day of the week. On the days following chemo treatments, I was sick and exhausted. Add the mental battle of thinking when's my next treatment, when am I going to feel terrible again, do I have any tests at school that week because that won’t work, and will the nurses miss the port access this week and have to try again. Every day was this mental battle for me, and I still struggle with it. I stopped chemo after one year.
After waiting and watching to see the affects of my first chemo treatment, it was finally time to start some sort of treatment again. I had a couple options, I could go back on the same chemotherapy I was on in 2020, I could try cryoabilation which essentially attempts to freeze away the inside of the tumours, or I could try a different type of pill form chemotherapy. I opted for the pill form chemotherapy. While making this decision the biggest worry for me was quality of life. I am going to university in September, I am playing soccer full time, as well as having so many grad activities to finish off my highschool years, I did not want to miss out on any of this. Having started this chemo in December of 2022 my symptoms have been manageable and I have been able to work on my physical and mental well being throughout the process. To what comes next I do not know, howeever, through all of this I have learned a very important skill of self-management that I can adapt into everything I do and it will get me through whatever life throws at me next.
What is a Desmoid Tumour or Aggressive Fibromatosis?
Desmoid tumours, also called aggressive fibromatosis or desmoid-type fibromatosis, are rare and often debilitating and disfiguring soft-tissue tumours. They are characterized by a growth pattern that can invade surrounding healthy tissues, including joints, muscle and viscera. While they can arise in any part of the body, the most common sites are the upper extremities (arm, forearm, and hand), lower extremities (hip, thigh, leg, and foot), abdominal wall, thoracic areas, and the head and neck.
The severity of a desmoid tumour can vary based on the location of the tumour and the aggressiveness of its growth pattern. Desmoid tumours can cause significant morbidities, including severe pain, internal bleeding, incapacitating loss of range of motion, and, in rare cases, death.
While desmoid tumours can occur in people between 15 and 60 years of age, they are most commonly diagnosed in young adults between 30-40 years of age. Women are also 2 to 3 times more likely to develop them than men.
Source: SpringWorks (https://www.springworkstx.com/patients-families/desmoid-tumor/)
Christina’s story: The disease that lurks beneath.
Learn about Christina’s ongoing journey from diagnosis to treatment. This devastating disease affects as many as 2 to 4 people in 1 million each year. It’s so rare that most people don’t talk about it, let alone know about it. Let her story inspire you to sign up for Athina’s Ride and raise funds to help people like Athina and Christina.
The Desmoid Tumour Foundation of Canada (DFC) is the official Canadian charity for desmoid research.
Since our first fundraiser in May 2017, the DFC has donated $295,000 towards Desmoid research. We are dedicated to funding research to help find better treatments and ultimately a cure for this devastating disease.
Unlike more well known diseases, rare conditions like Desmoids do not receive the same amount of funding for research. Funding cutting-edge research is the only way to develop new and effective therapies. Thanks to the research underway through the US foundation DTRF and the money we have raised in Canada, we are now seeing an exciting number of new drugs and modalities to treat this condition. But there is a lot more work to be done.
Research funds distributed by the Desmoid Tumour Foundation of Canada (2017 - 2021):
2021: $40,000 CDN donated
- Stanford University, California, USA ($40,000) – Gerlinde Wernig “Studying CD47 blockade as an immunotherapy for desmoid-type fibromatosis”; part 1 of 2-year study
The Global Scientific Advisory Board will meet to review new research being submitted. The studies they recommend for funding will then be reviewed by our medical advisory board and they will select which research we should support with the funds raised in 2021.
2019: $100,000 CDN donated
- Stanford University, California, USA ($50,000) – Gerlinde Wernig “To evaluate whether gamma-secretase inhibitor PF-03084014 blocks JUN-mediated DTF”; $50,000 CDN
- Ghent University, Belgium ($50,000) – Kris Vleminckx, MD “Identifying and Characterizing dependency factors in a genetic Xemopus tropicalis desmoid tumor model”.
2018: $85,000 CDN donated
- Ohio State University, US ($85,000) – Dr. Raphael E. Pollock “The role of the tumor microenvironment in S45F desmoid tumor chemotherapeutic resistance”.
2017: $70,000 CDN donated
- Hospital for Sick Children, Toronto, Canada ($40,000) – Drs. Mushriq Al-Jazrawe, and Ben Alman will conduct a single cell-derived clonal analysis of desmoid tumours to investigate tumour-stoma interactions (funds disbursed in 2018).
- Duke University, North Carolina, USA ($30,000) – The creation of transgenic mice to be available to scientists globally.
Update on Funds Raised in 2021 & 2022
Our inaugural Athina's Ride in 2021 raised $132,700 to help support research into desmoid tumour therapies. That’s an unprecedented amount for a first-time charitable event and 100% of the proceeds go to the Desmoid Tumour Foundation of Canada (DFC). In year two we raised another $79,435 which makes it over $212,135 going towards research.
The first $40,000 was awarded to year 1 of Wernig Gerlinde Study Stanford School of Medicine, Department of Pathology – “Studying CD47 blockade as an immunotherapy for desmoid-type fibromatosis”
Year 2 with money combined from the 1st year the DTF committed a total of $159,000
Funded Research Grants for 2022
The following 3 grants were funded jointly between DFC and DTRF
Principal Investigator: Jonathan Noujaim, MD
Professional Title: Hematologist and Medical Oncologist, Assistant Clinical Professor of Medicine
Sponsoring Institution: Canadian Sarcoma Clinical and Research Collaboration (CANSARCC)
Proposal Title: Tyrosine Kinase Inhibitors in Desmoid-type Fibromatosis – A Canadian Multicenter
Retrospective CanSaRCC Study
Total Budget/Length: $30,000 over 1 year
DFC Funding: $19,200 CDN
Lay Abstract: Desmoid tumors (DT) are aggressive tumors predominantly affecting young people. They
can potentially cause significant pain, decreased limb mobility and invalidity. In certain individuals, DTs
can even be life threatening. Although some tumors may spontaneously shrink or remain stable without
any treatment, patients with growing tumors will require either surgery or chemotherapy. Over the last
decades, a number of drugs including hormonal blockers like tamoxifen, intravenous chemotherapy like
weekly methotrexate and vinblastine and doxorubicin and targeted therapy like imatinib have shown
various degrees of success in treating DTs. Recently, two new targeted drugs, sorafenib and pazopanib,
were approved to treat DTs. In clinical trials, DTs treated with either drug shown significant tumor
shrinkage and control over time. Since their approval and routine use in practice, there remains many
unknowns. Duration of treatment is still ill defined. Outcomes of patients who failed or stopped
sorafenib or pazopanib are unknown. Predicting which patients may respond to these novel drugs is still
a challenge. The main objective of this multicenter Canadian retrospective study is to collect real world
data to better guide physicians in managing these rare tumors.
Principal Investigator: Joanna Przybyl, PhD
Professional Title: Assistant Professor, Department of Surgery, McGill University
Sponsoring Institution: Research Institute – McGill University Health Centre
Proposal Title: Targeting hexosamine biosynthesis pathway for the treatment of desmoid tumors
Total Budget/Length: $130,000 over 2 years
DFC Funding: $41,600 CDN/year for 2 years (total $83,200)
Lay Abstract: Cancer cells rewire metabolic pathways and energy production to support the enhanced
proliferation, invasion and resistance to treatment. We recently found a remarkable enrichment of
genes involved in hexosamine biosynthesis pathway (one of the glucose metabolism pathways) in a
subset of leiomyosarcoma (LMS). We demonstrated that expression of GFPT2, the key enzyme of the
hexosamine biosynthesis pathway, is associated with poor clinical outcome in LMS. Following the study
on this pathway in LMS, we performed a large-scale immunohistochemistry screening of more than 30
different types of soft tissue tumors and we discovered nearly universal expression of GFPT2 in desmoid
type fibromatosis (DTF). Our high-throughput transcriptomic analysis of DTF and 9 other types of fibrotic
lesions identified significant enrichment of multiple genes implicated in hexosamine biosynthesis
pathway in DTF compared to the other types of fibrotic lesions. We also found a candidate effector of
the activation of this pathway in DTF, which may have a pro-oncogenic role and may be associated with
resistance to treatment.
Targeting hexosamine biosynthesis pathway was demonstrated to provide therapeutic benefit in a
number of preclinical models of cancer. Thus, our preliminary findings provide a rationale to explore the
potential of therapeutic targeting of the hexosamine biosynthesis pathway in DTF. The modulation of
glucose metabolism through hexosamine biosynthesis pathway is a promising direction of research and
our proposal offers the first functional exploration of the role of this pathway in DTF. Successful
completion of this study will hopefully lead to novel therapeutic options for patients with DTF.
Principal Investigator: Kris Vleminckx PhD, Ghent University
Professional Title: Professor (PhD) UGent, Department of Biomedical Molecular Biology
Sponsoring Institution: Ghent University, Belgium
Proposal Title: Investigating EXH2 as a druggable mediator of immune cell exclusion in desmoid tumours
Total Budget/Length: $65,000 (year 2 of 2)
DFC Funding: $41,600 CDN
Below is a lay-friendly summary of the findings and impact (or potential impact) in desmoid research
and/or patient care. At this moment we have set up several experiments to test our central hypothesis
that a molecular therapy that we found previously to mediate desmoid tumor shrinkage in a genetic frog
model, is doing this by the activation of an anti-tumor immune response. The readouts for these
experiments will become available in the next coming months. If the working hypothesis is confirmed,
this opens roads for treatment of desmoid tumor patients via immune checkpoint inhibition therapy.
The Following Grant was Funded by DFC
Principal Investigator: Rebecca Gladdy, Luninfeld-Tanenbaum Research
Professional Title: Dr Rebecca Gladdy, Assistant Professor, General Surgery, Mount Sinai Hospital
Sponsoring Institution: Luninfeld Institute/Mount Sinai Toronto
Proposal Title: Clinical Outcomes and Genetic Analysis of Sarcoma
Sub-study: Desmoid tumor and pregnancy: effect of pregnancy on disease control and effect of
diagnosis on pregnancy history. An international multicenter retrospective observational study:
Investigating EXH2 as a druggable mediator of immune cell exclusion in desmoid tumours
Total Budget/Length: $15,000 year 1 of 1
DFC Funding: $15,000 CDN
A significant proportion of female patients with a diagnosis of Desmoid Tumours (DT) have a recent
pregnancy history and on the contrary, the diagnosis of DT is often made during gestation or shortly
thereafter. Although some evidences suggest that Desmoid is modulated by hormonal signaling (i.e.
estrogens), the role of specific signaling pathways is not well understood.
Understanding the behavior of desmoids during or after pregnancy is crucial to define the safest
management of the tumor itself and of the pregnancy. Defining the impact of DT on any decision to
interrupt or avoid pregnancy and on obstetrics risk is pivotal to early define potentially worrisome
conditions. Moreover, analyzing the impact of DT on decisions regarding the pregnancy (and in turn
fertility), we will be able to implement new tools assisting and counselling women with Desmoids.
There is a growing interest in defining potential risk of recurrence or progression during or after
pregnancy and in identifying potential obstetrical risks and infertility rate of desmoid patients.
Defining the impact of pregnancy on diagnosis, progression and recurrence of DT will help defining the
best therapeutical approach to fertile patients. If we are able to define potential risk factors for tumor
progression, we could adequate the follow-up regimen and the therapeutic sequence. Understanding
the effect of Desmoids on pregnancy will also better define the risk of pregnancy/delivery and the
eventual desire to avoid pregnancy. Finally, defining the potentially detrimental psychological effect of
DT diagnosis on pregnancy planning would help providing our patients with the adequate tools for
Total amount of funding allocated for 2022: $117,400. ($19,200+41,600+41,600+15,000)
Total amount of funding allocated for 2023: 41,600.
Total dollars committed in 2022 $159,000.
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