Run for Awareness. Run for Research. Run for Hope.

September is Desmoid Tumor Awareness Month, and the Desmoid Defenders 5K is an opportunity to bring our community together to support patients and families affected by desmoid tumors while helping advance critical research.

Join us on September 20, 2026! Participants can choose between a timed 5K Run or a 1-Mile Walk/Fun Run, or if you can't join us in person, you can join from Home! Every registration includes an event participant T-shirt (must submit entry by 9/6/26.) Virtual at home participants' event shirts will be mailed AFTER the in-person event and a shipping charge of $5 will be added to each registration.

Check out the event Store and Grab your commemorative event Hat in honor of Maeve!

This event was inspired by a remarkable young athlete named Maeve Long! Be a part of her journey! 

Why We Run

At just 14 years old, Maeve Long was a healthy, active teenager who loved soccer, basketball, and track. A two-time AAU Junior Olympics qualifier, she was focused on the sports she loved and the future ahead of her.

In November 2025, Maeve was diagnosed with Desmoid Fibromatosis, an extremely rare and locally aggressive tumor condition that affects only 5–6 people per million. Her tumor surrounds her carotid artery and impacts her vision due to its location near her optic nerve.

Since her diagnosis, Maeve has undergone chemotherapy, frequent testing, and ongoing treatment, all while maintaining the courage, determination, and positive attitude that have inspired everyone around her.

Maeve's journey is the reason this event was created.

Her story reminds us of the challenges faced by patients and families living with rare diseases, but it also highlights the power of community, support, and hope.

About Desmoid Tumors

Desmoid tumors are rare, invasive tumors that do not spread to distant parts of the body but can cause significant damage by growing into surrounding tissues, muscles, nerves, blood vessels, and organs.

Because desmoid tumors are so rare, research funding and awareness are essential. Continued research helps improve treatment options, advance medical understanding, and move closer to finding more effective therapies for patients living with this disease.

Our Mission

The Desmoid Defenders 5K was created to:

Raise awareness of desmoid tumors and their impact on patients and families.
Support ongoing research efforts aimed at improving treatment and outcomes.
Bring our community together in support of those facing this rare disease.
Honor the strength and resilience of patients like Maeve.
Whether you run, walk, donate, volunteer, or cheer from the sidelines, you are helping make a difference.

Together, we can raise awareness, support research, and provide hope for those affected by desmoid tumors.

Join us this September and become a Desmoid Defender! Help us make our first event a success in raising awareness and reaching 200+ participants with a goal of raising over $10,000 for the Desmoid Tumor Research Foundation! 

Be sure to follow and engage with the Desmoid Tumor Research Foundation on Facebook (Facebook.com/desmoid), Instagram (@dtrfoundation), Twitter (@DTRFoundation) and LinkedIn (linkedin.com/company/desmoid-tumor research-foundation-dtrf-/)
Thank you for helping to raise #DesmoidAwareness!

#DesmoidAwareness #DesmoidDefenders5K