CRMO Awareness Virtual 5K Walk-A-Thon

in United States

Online registration for this event has closed.

  • CRMO Awareness 5K Walk-A-Thon
    Includes a cool event t-shirt and matching event CRMO Awareness jelly bracelet sent directly to your home (guaranteed if registered by September 19; after that date we will do our best to provide)

    Online registration is closed for this category.

  • Donation To Kaila's Komfort
    Contribute to the cause without registering for the walk.

    Online registration is closed for this category.

Where will the proceeds from this year's walk go?

Are you wondering what your registration/donation to the CRMO Awareness 5K Walk-A-Thon is supporting this year? This event is our tiny non-profit's largest fundraiser of the year and supports our care package program which allows us to bring comfort, understanding and hope to CRMO Warriors around the world. Additionally, each year we donate a portion of the walk proceeds to a CRMO specific research project. We work with the leading CRMO doctors/researchers to determine which project most needs our support, while ensuring that the results will be open access, meaning they will share the outcome of the project. Last year we donated the majority of the walk's proceeds to support the CHOIR Registry. Since 2018, the CHOIR registry has grown from one single site to 17 sites across nine countries and five continents as of July 2023. A total of 375 patients have been enrolled, and a total of 3,123 individual clinical visits have been recorded. Among these patients, 115 were diagnosed more than five years ago. At the most recent visit, 60% of patients still needed to take their second-line treatments. Half have minimal or no active symptoms. As families always ask, can we predict who may not need medications after taking medications for a while? Do certain treatment strategies, i.e., combining medications early on and aggressive treatment right after the diagnosis, translate into better outcomes? We would like to answer these questions or use our current dataset to design a larger-scale study. Funds raised from this year's event will be used to support data harvesting and statistical analysis. As information is gathered, it will be available in the public domain to allow open access by all families and physicians. We are so grateful for the work this international group of researchers are taking part in. Thank you for supporting this important work so that one day we have easily accessible information to better inform us and help us make important decisions for our own families affected by CRMO.

Please consider joining us this year, and help support this important work that benefits all CRMO Warriors worldwide. And thank you from the bottom of our hearts to everyone that has already registered or donated. We truly appreciate our amazing village!

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