About Kaila's Komfort
Kaila’s Komfort was founded in 2015 by then 14-year old Kaila Mellos. What started out as a Girl Scout Silver Award Project turned into a passion for touching the lives of others who have been affected by a rare auto inflammatory disease she has. Chronic Recurrent Multifocal Osteomyelitis (CRMO) is a painful auto-inflammatory bone disease. This diagnosis is rare - 1 in a million - it typically is diagnosed in childhood, and by the time people are diagnosed, they have gone through a lot of pain, a lot of testing, and a lot of poking and prodding. Many also have additional secondary diseases - Arthritis, Psoriasis, Crohn's, IBS, as well as others, and they endure a lot of pain. Kaila’s project idea was to create care packages for children and adults around the world that were recently diagnosed with CRMO. After the Award Project was completed, she decided that she wanted to continue with her newfound passion. “I hope to continue to be able to make a difference in the lives of CRMO patients by providing comfort with items that will help relieve pain, provide distractions during medical treatments, help make treatment easier and less painful, and also let them know they are not alone. Since I have personally gone through this, I know firsthand what can bring comfort while traveling this lonely path.”
Below are two short videos to help you understand CRMO a bit more. So proud to know many amazing Warriors! Talk about courage and strength . . . which comes in so many forms . . . to talk about their experiences and trials, to spread awareness, to support one another and offer understanding, to be able to acknowledge that some days it can just be too much, to push forward despite the many incredible challenges, and to not let their challenges define them or take away their kind hearts, compassion and ability to bring light into the world!
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Chronic Recurrent Multifocal Osteomyelitis (CRMO)
What is it?
CRMO (Chronic Recurrent Multifocal Osteomyelitis) is also known as CNO (Chronic Non-bacterial Osteomyelitis) CRMO/CNO is a rare and serious disease. It involves inflammation of one or more bones that can be chronic. Symptoms can come and go. CRMO/CNO is treated by pediatric rheumatologists.
Inflammation is a normal process. It is the way our immune system protects our bodies from infections and germs. It causes pain, redness, and swelling. In CRMO, however, there is no infection. Instead, the immune system wrongly attacks normal bone. This causes inflammation.
The cause of CRMO/CNO is unknown. Genetic and environmental factors may play a role.
CRMO/CNO is a “diagnosis of exclusion.” This means that other diseases must be ruled out before the diagnosis can be made. Generally, many tests are required, such as blood tests, X -rays, bone scans, MRI, and often a bone biopsy.
For more information on CRMO, please click here to be taken the the crmoawareness.org website.
Inflammation is a normal process. It is the way our immune system protects our bodies from infections and germs. It causes pain, redness, and swelling. In CRMO, however, there is no infection. Instead, the immune system wrongly attacks normal bone. This causes inflammation.
The cause of CRMO/CNO is unknown. Genetic and environmental factors may play a role.
CRMO/CNO is a “diagnosis of exclusion.” This means that other diseases must be ruled out before the diagnosis can be made. Generally, many tests are required, such as blood tests, X -rays, bone scans, MRI, and often a bone biopsy.
For more information on CRMO, please click here to be taken the the crmoawareness.org website.
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Thank you to everyone that participated in the the 8th Annual CRMO Awareness Virtual 5K in October! It was a huge success, and we certainly felt the love from all around the world! 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 was a mix of in-person and virtual participation depending on registrant's preference or location. CRMO families, friends and supporters from around the world participated by walking, running, biking, skipping, wheeling, or rolling at least 3.1 miles to raise awareness and show support for the CRMO community. The goal of this event is to raise awareness in local communities, raise funds to support specific CRMO research and our various support programs, and most importantly, to bring CRMO families together and show CRMO Warriors worldwide that they are not alone.
This is our largest fundraiser of the year. This year, we raised $38,000 (we are still fundraising to meet our $50,000 goal). We will keep a small portion to support our care package program, and the remainder will be donated to Seattle Children's Hospital in support of the CHOIR registry, which we have contributed to over the past couple years. 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 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.
Thank you for once again making this a fun and rewarding event!!
This is our largest fundraiser of the year. This year, we raised $38,000 (we are still fundraising to meet our $50,000 goal). We will keep a small portion to support our care package program, and the remainder will be donated to Seattle Children's Hospital in support of the CHOIR registry, which we have contributed to over the past couple years. 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 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.
Thank you for once again making this a fun and rewarding event!!
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