This is our largest fundraiser of the year. This year, we plan to keep a small portion of the proceeds to help us continue our care package program, which brings comfort, understanding and a smile to those diagnosed with CRMO. The remainder of the funds will be donated to a specific CRMO project. Last year, all proceeds ($50,000 plus matching grant, bringing the total donation to $100,000) were donated to the CHOIR registry. Research happens in small steps. The work done with past funding (classification criteria) and clinical disease activity score (validated and published last year) allows researchers to move to the next step, which is to define several key terms using a team approach. Dr. Zhao (CRMO Specialist and Researcher at Seattle Children's Hospital) recently received bridge funding to help complete the tasks of determining the criteria of low (minimum) disease activity, flare, minimal clinically importance difference and duration of treatment. Additional funding is needed to bring together 20-30 workgroup members including physicians and patients/parents to work on this project. The majority of the proceeds from this event will be donated to provide this funding. Your participation and donations can help us fund this great work. This is fundamental research that needs to be done in order to conduct a clinical trial in a scientific way that will help us eventually get to an FDA-approved medication. This same work was done for juvenile idiopathic arthritis 20-25 years ago and now there are 6 approved medications and generic ones which even made it to market.

All research projects receiving funding from this event must be conducted by a reputable CRMO researcher (or group of researchers) at a major hospital or research institute and all findings of the research must be available in the public domain to allow open access by all families and physicians. We are so grateful for the work this very dedicated 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 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.