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.”
Watch this short video to learn more about CRMO and Kaila's Komfort |
Watch this video to hear Dr. Hermann Girschick explaining the history, diagnosis and treatment of CRMO/CNO |
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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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Our hearts are full, and we are so grateful for the wonderful support of people near and far who participated in the CRMO Awareness 5K this year! It was amazing to see so many people join together from locations all around the world to celebrate and support CRMO Warriors, spread awareness, and help us fund a CRMO specific research project that will be taking place at Seattle Children's Hospital. This year’s event took place over a 10-day period in October (CRMO Awareness Month), and we were joined and supported by 642 registrants, representing 33 US states and 8 countries.
Our number one goal of this event each year is to ensure that CRMO Warriors worldwide and their families are supported and surrounded by a community that walks alongside them. In addition, each year, we donate a portion of the proceeds to a specific research 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 CRMO 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 help answer these questions or use the current dataset to design a larger-scale study. So, we have decided again this year to donate all of the net proceeds (plus) to help move this research forward. Donations are still trickling in, but to date, this event brought in just under $37,000. We will be presenting Dr. Zhao and Seattle Children's Hospital a check for $35,000 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 will have easily accessible information to better inform us and help us make important decisions for our own families affected by CRMO.
And keep supporting CRMO Warriors and their families. It was amazing to see family, friends, neighbors, classmates, co-workers, teachers, physicians, sports teams and others walking and supporting these families. It can definitely be a lonely path, so please continue to remind these families that they are not alone through your actions. Thank you from the bottom of our hearts for your support. It means the world to us and to all the families around the world impacted by CRMO!
Our number one goal of this event each year is to ensure that CRMO Warriors worldwide and their families are supported and surrounded by a community that walks alongside them. In addition, each year, we donate a portion of the proceeds to a specific research 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 CRMO 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 help answer these questions or use the current dataset to design a larger-scale study. So, we have decided again this year to donate all of the net proceeds (plus) to help move this research forward. Donations are still trickling in, but to date, this event brought in just under $37,000. We will be presenting Dr. Zhao and Seattle Children's Hospital a check for $35,000 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 will have easily accessible information to better inform us and help us make important decisions for our own families affected by CRMO.
And keep supporting CRMO Warriors and their families. It was amazing to see family, friends, neighbors, classmates, co-workers, teachers, physicians, sports teams and others walking and supporting these families. It can definitely be a lonely path, so please continue to remind these families that they are not alone through your actions. Thank you from the bottom of our hearts for your support. It means the world to us and to all the families around the world impacted by CRMO!
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