CRMO Awareness Virtual 5K Walk-A-Thon - Team Abram

This year we will be participating in the 2023 CRMO Awareness Virtual Walk. If you would like to walk with us in person we are planning to walk at Tam O'Shanter Park, 5055 Hills & Dales Rd. NW, Canton, OH 44708 on Monday October 16th at 5:30pm. If you would like to join us for a meal beforehand we will meet at 5pm at a pavilion yet to be determined. We will provide sandwiches and ask that you bring a side or dessert to share with the group. Abram is requesting that everyone wear a non-scary costume to the walk to make it more fun!

Many of you already know what CRMO is, some of you may not or may not remember. CRMO (Chronic Recurrent Multifocal Osteomyelitis) is a rare and serious disease. It involves inflammation of multiple bones that can be long lasting or chronic. CRMO is an auto-inflammatory disease that causes inflammation on the bones, this inflammation causes painful lesions on the bone that causes the bone to break down.

Abram's journey with CRMO began in the Fall of 2020 when he developed a limp. His pediatrician thought it was Synovitis and treated him with a regimen of ibuprofen. In the spring of 2021 the limp came back, it was a persistent limp that would not go away. This limp appeared out of nowhere without injury. As the days turned into months his pain increased and he had days he was not able to walk from the pain. After many doctors appointments, blood draws, and tests, he was diagnosed with CRMO in July of 2021. His pain is currently controlled well with his medications and God's healing through the guidance of his doctors. We pray the medication is not only taking away his pain, but also controlling the inflammation in his bones to give them time to heal. Abram will have a full body MRI this coming month to determine if the medicine is doing it's job. Overall Abram is doing well at this time. He still has pain daily but the medicine makes it so he is able to run, jump and play like the little boy he is.

You are supporting desperately needed RESEARCH when you walk or donate!

Each year Kaila's Komfort donate a portion of the walk proceeds to a CRMO specific research project. They work with the leading CRMO doctors/researchers to determine which project most needs our support, while ensuring that the results will be open access, meaning they will share the outcome of the project. Last year they 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 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? They would like to answer these questions or use our current dataset to design a larger-scale study. Funds raised from this year's event will be used 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. They 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 have easily accessible information to better inform us and help us make important decisions for our own families affected by CRMO.

We thank you for praying with us and walking this journey. We of course would love it if you could join us for the virtual 5K, but what we really covet is your prayers for healing and guidance in this journey!
Thank you!

Team Abram Members

• Emily Gough - Donation To Kaila's Komfort
• Audrey Wilson - CRMO Awareness 5K Walk-A-Thon
• Heather Cooper - Donation To Kaila's Komfort
• Lata Wiggins - Donation To Kaila's Komfort
• Karol Niehaus - Donation To Kaila's Komfort
• Faylene Simmerman - Donation To Kaila's Komfort
• Carol Ohlemacher - Donation To Kaila's Komfort
• Don Montgomery - Donation To Kaila's Komfort
• Teresa Bistor - Donation To Kaila's Komfort
• Patti Elkins - Donation To Kaila's Komfort
• Grady & Betty Shea - Donation To Kaila's Komfort
• Steven Stocker - CRMO Awareness 5K Walk-A-Thon
• Connie Beshears - CRMO Awareness 5K Walk-A-Thon
• Abram George - CRMO Awareness 5K Walk-A-Thon
• Ezekiel George - CRMO Awareness 5K Walk-A-Thon
• Levi George - CRMO Awareness 5K Walk-A-Thon
• Ben George - CRMO Awareness 5K Walk-A-Thon
• Theo Wiggins - CRMO Awareness 5K Walk-A-Thon
• Rebecca Stoller - Donation To Kaila's Komfort
• Steven Sproat - Donation To Kaila's Komfort
• Cheryl George - CRMO Awareness 5K Walk-A-Thon
• Laura George - Donation To Kaila's Komfort
• Kate George - CRMO Awareness 5K Walk-A-Thon

Team Abram has raised $1,265.00.