Charity Spotlight: Osteogenesis Imperfecta Foundation

The Osteogenesis Imperfecta Foundation, also known as OIF, was founded in 1970. Its mission is to improve the quality of life for those that have what is also known as OI or “brittle bone disease” through research, education, awareness, education and support.

Osteogenesis Imperfecta

OI is characterized as a genetic disorder that results in fragile bones that break with little or without any trauma at all. Type-1 collagen is the main protein component for building bones, as well as playing a role in tendon and ligament development. The majority of cases are caused by a genetic mutation that alters how the body produces type-1 collagen. Approximately 20,000 to 50,000 people in the United States are estimated to have OI and it shows no discrimination in who it affects.

There are eight types of OI that are known and each classification is influenced by appearance and health conditions.

Type I is the mildest form of OI. Even the effects in type I patients vary. Some have the ability to walk and run, attain a normal or above-average height, and only experience a few bone fractures. While others aren’t as fortunate and experience more fractures, mobility issues and require surgery.

Type II is the most severe case of OI. Unfortunately, in many cases type II is lethal due to respiratory failure. Other complications of this type of OI include- numerous fractures, severe bone deformity, and small stature.

Type III is most severe among children that survive the newborn period. Complications of type III include- short stature, frequent fractures, scoliosis, overdeveloped head, underdeveloped facial bones and other issues.

Type IV is the moderate form of OI with conditions that range from type I all the way to type III.

Types V-VIII share appearance similarities with types II-IV.

OI Foundation

The OI Foundation began back in 1970 when a group of parents met in Chicago to discuss OI and its issues. They provide information to families, fund new research and promote public policy that supports those that are living with osteogenesis imperfecta.

One of their biggest events of the year is the OI Awareness Week. OI Awareness Week centers around Wishbone Day (International OI Awareness Day), which is May 6th. They encourage people to use the event to raise awareness for osteogenesis imperfecta by utilizing fundraising events, social media, and state proclamations.

Another major event that the OI Foundation holds is their annual national conference. This year’s conference will be a three-day event held from July 22-24, at the Walt Disney World Swan and Dolphin Resort in Orlando, Florida. The conference provides families and individuals who live with osteogenesis imperfecta the opportunity to take part in social events, OI education, and medical consultations.

A Success Story

Imagine the excitement of finding out that you and your loved one were expecting a little bundle of joy. Now imagine being told by doctors that your baby wouldn’t make it through childbirth, due to a Type II OI diagnosis. That’s the circumstance that Stephen and Stephanie Guin faced during her pregnancy with their daughter Harper. Rather than accept that outcome, Stephanie chose to do some research using resources such as the OI Foundation, a decision that would ultimately pay off. Harper was born, but instead of having Type II, tests would confirm Type IV which is a more moderate form of OI. Today, Harper is thriving, as she participates in dance competitions and is preparing to begin kindergarten in the fall.

Thousands of men, women and children fight through effects of OI on a daily basis. Thanks to the support from the Osteogenesis Imperfecta Foundation and an unbreakable spirit, the battle to find a cure carries on.

We proudly dedicate our May ‘Charity Spotlight’ to Harper Guin and the Shaner family.

You can find out more by visiting their Facebook page or by visiting their website.

About The Author

Creator of Clubhouse Corner, Doug has been covering Minor League Baseball since 2014. His work has been featured on YES Network-affiliated Pinstriped Prospects, Heels on the Field and Pinstripe Alley.