About Athina's Ride
Athina's Ride is a virtual cycling event that starts with training rides on May 10th and culminates on July 10th & 11th with an epic, COVID-friendly ride by yourself or with your cycling bubble friends. 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. So 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 enter to win some awesome prizes. 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 informed 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, and I received a port put in my chest and started chemo in November of 2019. The day I started 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 I only need to get a needle once or twice. Every day was this mental battle for me, and I still struggle with it. I stopped chemo after one year. Since December 2020, I have been getting MRIs every three months to watch for tumour growths and I feel grateful for the little things in my life that I missed out on for so long.
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.
About Desmoid Tumour Foundation Canada (DFC)
The Desmoid Tumour Foundation of Canada (DFC) is the official Canadian charity for desmoid research.
In the past three years the DFC has donated more than $250,000 towards Desmoid research. We are dedicated to funding research for this rare 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 - 2019):
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.
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