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. This year's donation will support the CHOIR registry and will specifically help fund a research coordinator who will extract data from clinical notes and assist other sites in completing data entry for scientific merit, and a statistician to conduct meaningful analysis that will enable the researchers to share the results with the CRMO community. The project is ongoing, and the researchers have multiple questions that they will ask the statisticians to help them answer, specifically:

· What are the usage patterns of second-line treatments and what are the corresponding changes in clinical disease activity and patient reported functions?

· Does the duration of NSAID treatment impact flare rate in children with good response to NSAIDs?

· What are the long-term off-medication remission for those who received only NSAIDs, those who received second-line treatments?

· Continuous safety monitoring and whether we can develop a risk model for TNFi associated psoriasis

The researchers' publication will then 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.

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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