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Kaila's Komfort hosted the first ever CRMO Awareness 5K in October 2017, which was the largest organized worldwide CRMO awareness event to ever take place. We will be hosting the seventh annual CRMO Awareness 5K Walk-A-Thon in October 2023 (CRMO Awareness Month). As in past year's, this event will be a mix of in-person and virtual depending on your location.
CRMO families, friends and supporters from around the world may participate by walking, running, biking, skipping, wheeling, or rolling at least 3.1 miles to raise awareness and show support for our CRMO community. The CRMO Awareness Virtual 5K Walk-A-Thon enables anyone to participate from anywhere, anytime that it is convenient during the week of October 13-22. You can participate in a group, with just your family or a friend, by yourself - at a park, on a track, on the treadmill in your home - whatever works best for you! Register by September 20 to be guaranteed a cool event t-shirt and matching event jelly bracelet sent directly to your home (after that date we will do our best to accommodate your size).
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.
Kaila's Komfort is a 501(c)(3) non-profit organization that was created to provide comfort to children and adults around the world diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO), to bring awareness, and to support families affected by this disease. We ship one-of-a-kind, personalized care packages around the world to kids and adults with CRMO and their families. For more information on CRMO and Kaila's Komfort, please visit our website: www.kailaskomfort.org.
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