Planning for the 8th Annual CRMO Awareness Virtual 5K is in full swing! This year’s event will take place anytime between October 5-12 (during CRMO Awareness Month). You can connect to the registration site here.
For those not familiar with this event, here is more information: Kaila's Komfort hosted the first ever CRMO Awareness 5K in October 2017, which was the largest organized worldwide CRMO awareness event to ever happen. As in past years, this year's event will be a mix of in-person and virtual participation depending on your preference or 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 the CRMO community. The CRMO Awareness Virtual 5K enables anyone to participate from anywhere, anytime that is convenient during the week of October 5-12. 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 living room - whatever works best for you! Register by September 12 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 requested size).
On the registration site, you can set up a team, and then share a link for friends and family to sign up or make a donation under your team name. In past years, we have had very large planned events where any CRMO families and friends joined together to walk, and other teams that did their walk entirely virtual - sharing a link to their team registration page on all social media and by email and they had many friends from all over the world sign up, but walked on a certain day in their own towns (several little micro walks supporting one amazing Warrior). We've also had families walk in cool places while on vacation, and others that got their neighborhood friends together to walk in a local park. Whatever you'd like to do works for this event. What a wonderful way to bring awareness to CRMO, feel the love and support of friends and family near and far and, if you choose, do this all with no planning other than setting up a registration site and sharing the information. Whether your walk is just you, or a group of 100 - it is completely up to you. That's the beauty of this event.
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.
Please plan to join us this year and invite your friends and family to walk with you. Please reach out if you have questions or need help getting started. We are happy to help.
For those not familiar with this event, here is more information: Kaila's Komfort hosted the first ever CRMO Awareness 5K in October 2017, which was the largest organized worldwide CRMO awareness event to ever happen. As in past years, this year's event will be a mix of in-person and virtual participation depending on your preference or 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 the CRMO community. The CRMO Awareness Virtual 5K enables anyone to participate from anywhere, anytime that is convenient during the week of October 5-12. 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 living room - whatever works best for you! Register by September 12 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 requested size).
On the registration site, you can set up a team, and then share a link for friends and family to sign up or make a donation under your team name. In past years, we have had very large planned events where any CRMO families and friends joined together to walk, and other teams that did their walk entirely virtual - sharing a link to their team registration page on all social media and by email and they had many friends from all over the world sign up, but walked on a certain day in their own towns (several little micro walks supporting one amazing Warrior). We've also had families walk in cool places while on vacation, and others that got their neighborhood friends together to walk in a local park. Whatever you'd like to do works for this event. What a wonderful way to bring awareness to CRMO, feel the love and support of friends and family near and far and, if you choose, do this all with no planning other than setting up a registration site and sharing the information. Whether your walk is just you, or a group of 100 - it is completely up to you. That's the beauty of this event.
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.
Please plan to join us this year and invite your friends and family to walk with you. Please reach out if you have questions or need help getting started. We are happy to help.
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