Osteogenesis Imperfecta is a condition that is near and dear to my heart. I have signed up to run a 54-mile ultra-marathon on May 6, 2023 in Folsom, CA to help raise awareness of and money for Osteogenesis Imperfecta (OI) research. Osteogenesis Imperfecta is a brittle bone condition characterized by fragile bones that break easily.
As some of you may or may not know, my son, and one of the greatest blessings of my life, was diagnosed with OI at birth; an extremely difficult diagnosis to understand and accept at first. I had never heard of it. What followed was three years of doctor visits, testing, numerous back-to-back breaks, and lots of casting. At age 3, the situation began to improve. He began receiving bisphosphonate infusions to ‘harden’ his bones and multiple rodding surgeries over the years to provide him the mobile life he now lives. By age 10, despite experiencing ~18 breaks and 7 surgeries, he lives a pretty active and normal life. I share this very personal story because were it not for breakthroughs in OI research, he would not have the opportunity to live the mobile life he currently does. His story is that of a moderate case of OI and some individuals experience much more challenging lives.
OI is a condition that affects roughly 50,000 Americans, and approximately 520,000 people worldwide. While not a large percentage of the population, those who have been diagnosed experience significant life challenges. In addition to physical limitations and, in many cases, bone deformity, the psychological impact on individuals living with OI cannot be understated. Never knowing when you could break a bone is a scary way to live.
My goal from running is to raise $10,000 for OI research, which is $185/mi OR 200 donors at $50 each. OI research currently being conducted includes:
- A major longitudinal study of OI - Brittle Bone Disorders Consortium (BBDC)
- The safety and use of clear aligners (such as Invisalign) on people with OI (teeth are bones and are affected as well) - BBDC
- Understanding the psychological needs of people living with OI - BBDC
- Ongoing studies providing screening, evaluations, and growth protocol for children with OI – National Institutes of Health (NIH)
- Drug research to enhance natural bone remodeling in adults diagnosed with OI - Sanofi
Please join me in raising awareness and support for this cause by donating in the link below. Donations will support all of the aforementioned studies. Continued funding of OI research plays a major role in medical breakthroughs to enhance the quality of life for those living with the condition. Your support goes a long way!
