Running For Answers

Running For Answers

The countdown is officially underway for a 5K very near to my heart. On September 22nd, I will be ‘Running for Answers’ in Philly for the Desmoid Tumor Research Foundation’s 5K Run/Walk to End Desmoid Tumors.

While I had high hopes I’d be running the race this year, I am grateful to be able to participate as a walker. The run/walk will cap off a two-day-long event – a weekend I have looked forward to all year.

Connecting with Fellow Warriors

DTRF Annual Patient Meeting

The weekend will kick off with the DTRF’s Annual Patient Meeting. The event is an opportunity for desmoid patients and their caregivers to connect with one another as well as learn from doctors and researchers working toward finding a cure.

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While I’m excited to learn, I am more excited to connect. I have yet to meet anyone with a desmoid tumor in person.

Every year only about 900 patients (3 in 1 million people!) are diagnosed with [a desmoid tumor] in the United States.

While I want to soak up as much as I can from the experts, I am most anxious to be in a room full of people who have fought or are currently fighting a similar fight. I’m ready to celebrate with one another, share some hugs, shed some tears (there will most certainly be tears), as well as learn from and cheer one another on. I’ve already experienced how special it is to connect with fellow warriors online. This is an opportunity I cannot pass up and am so thankful for the DTRF’s efforts to make this day possible.

5K Run/Walk to End Desmoid Tumors

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The day after the patient meeting, patients, caregivers, friends, and family will gather to participate in the Running for Answers 5K run/walk to raise awareness for desmoid tumors.

Participants are encouraged to rock knee high socks during the race. I need your wild, crazy, fun ideas! Drop your thoughts on what I should wear in the comments. (photo source:

If you are interested in supporting the efforts of the DTRF alongside me, you can donate directly to the DTRF.

As a rare disease patient, I am incredibly thankful for the DTRF.

1 in 2 rare diseases don’t have a foundation or research support group.

Global Genes Rare Facts

The DTRF is a resource I have turned to time and time again. Thanks to their efforts, I am confident that one day we will find a cure.

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