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Athina’s Ride

@athinasride

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JUNE 27th in Oyama!
Athina's Ride is a cycling event raising funds for Desmoid Tumour research our mission is to find a cure for this rare disease.

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September is Desmoid Tumour Awareness Month—a time to raise awareness, share information, and recognize the patients, caregivers, families, and healthcare professionals affected by desmoid tumours.

Desmoid tumours are rare, non-metastatic tumours that can be locally aggressive and may cause significant physical and emotional challenges. Because they are uncommon, many people have never heard of them, and patients may face delays in diagnosis, limited treatment options, and feelings of isolation.

Throughout September, the Desmoid Tumour Foundation of Canada is helping make the invisible visible. By sharing information and personal experiences, we can build understanding, strengthen support, and remind those affected that they are not alone.

Whether you are living with a desmoid tumour, caring for someone who is, supporting a loved one, or simply learning more, your voice and your support matter.

Join us this month as we raise awareness, connect our community, and work toward better support, improved care, and continued research.

Share this post to help spread awareness.

#DesmoidTumourAwarenessMonth #DesmoidAwareness #DesmoidTumour #RareDisease #RareCancer

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The "Why" Behind Run For Rare

I wanted to share a little more about the story behind this event and why this cause means so much to me.

If you'd like to be part of the day, come join me on Sunday, August 16 for a loop (or five!) around Wood Lake.

Each loop is 17km and this is not a race, just a fun and challenging way to get outside and move together. Whether you run, ride, walk, cheer, or simply donate, every bit of support means the world.

If you'd like to support the fundraiser, the donation link is in my bio. Every donation, share, and person who comes out helps make a difference. ❤️

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RUN FOR RARE ❤️🏃

On Sunday, August 16, I'm taking on my biggest running challenge yet—80 km (50 miles) around Wood Lake—to raise $1,000 for the Desmoid Tumor Foundation of Canada.

I'm doing this for one of my closest friends, Athina, who was diagnosed with Desmoid Fibromatosis at just 15 years old. It's a rare disease that affects only 2–4 people per million, and I hope this run can help raise both awareness and funds for research.

This isn't a race, it's a community run. Whether you want to run one loop (17 km), a few loops, ride your bike alongside, hang out at the aid station, or simply come cheer, I'd love to have you there. I'll have my car set up as an aid station, making it easy to refuel, take a break, and spend the day together.

Wether you are able to join or not, I'd be incredibly grateful if you'd make a donation. Every dollar helps support research, education, and awareness for those living with desmoid tumors. If donating isn't possible, sharing this post is another amazing way to support the cause.

The donation link is in my bio. ❤️

More specific details about the meeting spot and timing will be coming soon!

If you're interested in joining or have any questions or ideas, send me a DM. I'd love to make this an awesome day with as many people from the community as possible!

Run your distance. Support a rare disease.

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Today I rode my own Athina’s Ride, and it reminded me once again why this journey means so much.

As Athina’s mom, I’ve seen firsthand the challenges that come with living with a desmoid tumour. That’s why Athina’s Ride is about so much more than cycling—it’s about raising funds for research, creating awareness, and giving hope that one day we’ll find a cure.

One of the most meaningful moments this past weekend was having Amanda volunteer with us at the Okanagan Graveller and help with Athina’s Ride. Amanda is also living with a desmoid tumour. If you grabbed some post-ride food, you probably met her.

Desmoid tumours affect only about 3 in a million people each year. To have both Athina and Amanda together at the same event was incredibly special—and a powerful reminder of why this work is so important.

To everyone who has donated, volunteered, supported, or shared our story over the years, thank you. Because of you, we’re helping fund research and bringing hope to families affected by this rare disease.

We’ll keep riding. We’ll keep raising awareness. And we’ll keep believing that together, we can help find a cure. 💙

#desmoidtumorawareness #awareiamrare

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The 2026 Okanagan Graveller! 🚴‍♂️💨

Incredible sight seeing hundreds of riders roll out together for the mass start.

A huge thank you to every rider, volunteer, sponsor, spectator, and crew member who helped make this such a special day. Your energy is what makes this event unforgettable.

#OkanaganGraveller #GravelCycling #RideBC #ExploreBC #CyclingLife GravelBike Okanagan

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From grassroots to global impact 💛

Since 2017, the Desmoid Tumour Foundation of Canada has proudly funded $595,638 CAD in research — with a total commitment of $727,518 CAD toward advancing the understanding and treatment of desmoid tumours.

This work has supported leading researchers and institutions around the world — from Canada to the U.S., Europe, and beyond — all working toward better outcomes for patients living with this rare disease.

From early-stage tumor biology…
To breakthrough treatment pathways…
To cutting-edge AI models predicting disease progression…

Every dollar raised is pushing the science forward.

And this only happens because of YOU — our community, our supporters, our fundraisers, and everyone who continues to show up, share, and believe in what’s possible.

We’re not done yet.

💛 More research
💛 More answers
💛 More hope

#RideForTheRare #DesmoidTumor #RareDiseaseResearch #MakeAnImpact #ResearchMatters

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🌍💙 This weekend, the Desmoid Tumour Research Foundation hosted the Together We Will Weekend in Chicago — one of the most important gatherings for our community.

Patients, caregivers, doctors, researchers, and clinicians all came together with one shared goal: advancing treatment and finding a cure for desmoid tumours.

Conferences like this are critical. They bring leading minds and lived experiences into the same room, sparking collaboration, sharing the latest research, and giving hope to families impacted by this rare disease.

If you are a patient or caregiver, we encourage you to consider attending next year. The knowledge, connections, and support found here are truly invaluable. 💙

At the Desmoid Tumour Foundation of Canada, we are proud to support this vital work and continue funding research that directly benefits our community.

Thank you @dtrfoundation for bringing us all together.

#TogetherWeWill #DesmoidTumour #DesmoidAwareness #ResearchMatters #HopeForACure #awarethatimrare

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Today I spent the day in Chicago at the Together We Will Weekend with Athina, listening to incredible doctors, researchers, and clinicians who are working tirelessly to advance treatments and move us closer to a cure.

I was especially grateful to meet some of the doctors and researchers whose work has been funded through money raised by Athina’s Ride — such a powerful reminder of the impact this community is making.

I also had the chance to connect with patients, caregivers, and advocates who inspire so much strength and hope.

A huge thank you to the DTRF for bringing us all together and leading the way toward better treatments and, one day, a cure.

Together we are stronger. Together we will. 💙

#TogetherWeWill #DTRF #DesmoidTumor #ResearchMatters #DFC
#athinasride #rarediseaseday

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Who’s joining us in Chicago?

The Desmoid Tumour Research Foundation’s “Together We Will Weekend” is coming up, and we’d love to see members of our community there! 💙 This event brings together patients, families, researchers, and supporters all working toward a future without desmoid tumours.

📍 Chicago
📅 September 2025

Let us know in the comments if you’ll be attending — we’d love to connect in person! 💙💙💙

#DesmoidTumor #DesmoidAwareness #TogetherWeWill #DTRF #DesmoidTumorResearch

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A little fundraising, some good stories, shakeratos, all with a bicycle 🚴 in hand … stop by the the start tomorrow morning at the start of the @okanagangranfondo …donations for coffee for @athinasride will be in full effect

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We’ve partnered with the @okanagangranfondo to bring you custom laser-engraved top caps and bar ends!⁠
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🛠️ Precision machined from 6061 aluminum
🎨 Available in 15 vibrant anodized colours
🇨🇦 Laser engraved in Whistler, BC
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Now available at seatoskyengraving.com — link in bio!⁠
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💛 Profits from each sale will go to @athinasride in support of Desmoid Tumour research

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What is a Desmoid tumour and why am I riding 85 km on July 13 in Athina’s ride?

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 usually 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.

My niece Athina was diagnosed with an aggressive form of Desmoid tumours at the age of 13, she is now 19 and still fighting this disease that a cure has yet to be discovered. Athina has been receiving chemotherapy with both a port or oral over the last 5 years, she’s had drop foot, cryblation, surgeries, CRPS, blood clots. She goes to Vancouver every three months for an MRI and to meet with her oncologist and tumour board.

Unfortunately, Athina’s tumours have spread starting behind her knee and have worked there way up to her hip with multiple tumours varying in sizes.

This will be my fifth year participating in Athina’s ride and with the help of friends and family I have raised $12,000. Rather than just give a donation this year I will be matching up to $1000 of donations and my father-in-law said he would match my donation. If you would like to help by making a donation you will receive a tax receipt, 100% of the funds raised go directly to Canadian Desmoid foundation for research. The link is in my bio.

Thank you ❤️

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