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 sixth annual CRMO Awareness 5K Walk-A-Thon in October 2022 (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 9-15. 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 19 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. 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:
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.
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.
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 sixth annual CRMO Awareness 5K Walk-A-Thon in October 2022 (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 9-15. 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 19 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. 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.
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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