Kaila's Komfort hosted the first ever CRMO Awareness 5K in October 2017, which was the largest organized worldwide CRMO awareness event to date. We will be hosting the fifth annual CRMO Awareness 5K Walk-A-Thon in October 2021 (CRMO Awareness Month). As in past year's, this event will be a mix of in-person and virtual depending on your location. As we are still in a Pandemic, participants of the CRMO Awareness Virtual 5K Walk-A-Thon shall follow all applicable local, state, and national guidelines and regulations regarding exercise and social distancing while participating in the event.
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 3-10. 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 7 to be guaranteed a cool event t-shirt and superhero cape sent directly to your home (after that date we will do our best to accommodate your size).
This year, the majority of the proceeds of the Walk-A-Thon will be donated to a CRMO specific research project. The Cassat Laboratory at Vanderbilt University Medical Center studies infectious and inflammatory diseases of bone, including CRMO/CNO. Of particular importance to CRMO research, and in collaboration with Dr. Zhao and Dr. Ferguson, they have been studying how bone and immune cells isolated from patients interact to cause inflammation and bone damage. They have also created innovative new approaches to directly visualize molecular changes in bone specimens, with the hope that these tools will ultimately provide both diagnostic and prognostic information for patients suspected of having CRMO. The proposed pilot project will synergistically merge their basic science expertise with outstanding investigators who perform clinical and translational research focused on patients with CRMO. They will leverage a new technique to “see” the genetic changes that are occurring in normal versus inflamed bone using biopsies from patients with CRMO. They hope that this approach will enable their interdisciplinary team to identify specific markers that will help to diagnose CRMO using either blood or bone samples. There is a desperate need for new tests that allow doctors to determine if a patient has CRMO, as opposed to another bone disease like cancer or infection and instead of just diagnosing after excluding everything else. Long term, we expect this pilot project to fuel a large NIH-funded study that will prospectively evaluate how imaging the genetic changes in bone can provide a diagnosis, prognosis, or new treatment option for patients and families suffering from CRMO.
We need to raise a minimum of $20,000 to provide the funding for this pilot project. You can help us by signing up for the Walk-A-Thon or asking friends and family to donate to this important research.
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.