My name is Ted Trahan. I am married to Sharon, and we have two adult children, Greg and Käthe. Greg has OI and we are excited to share that he is recently engaged to Natalie, who also has OI. I am one of the OIFE delegates of the associate member organization OIF in the USA.

In what way does OI affect you personally?
As a parent of a child with OI, osteogenesis imperfecta has presented me with the highest highs and lowest lows. The lows come from watching my child endure the effects of OI and associated surgeries, while the highs come from watching him and others in the OI community overcome barriers to lead their lives and just become great people!

The OI Foundation
I am on the board of the U.S. Osteogenesis Imperfecta Foundation (OIF) and am currently serving as President. The OIF started with a story Gemma Geisman wrote to Redbook Magazine in 1967 about her experiences raising a son with OI. Following publication of that story, letters poured in from families in similar situations from all across the nation. Due to that response, Gemma and several other parents founded the OI Foundation in 1970.

The most important work of the OIF is stated in our mission: to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness, and mutual support.

Today the OIF reaches more than 10,000 individuals and families of people with OI through social media, in addition to hundreds of individuals signed up within its membership. OIF programming is coordinated by staff, with local and regional events run or supported by volunteers. In addition, the staff is responsible for oversight of information and resources for families and medical professionals, scientific and research meetings, national conferences, and liaisons with other patient advocacy groups.

We are eagerly looking forward to the OIF’s first in-person national conference since the COVID-19 pandemic. The conference will be held 19-21 July 2024 in Omaha, Nebraska. It is open for people from all over the world. Find more information here.

What do you do in your free time?
Outside of the OIF and work I like to sail. Sailing is a crew activity. As captain I rely on a competent first mate and a crew that takes care of tasks and provides camaraderie. The same is true for us individually, with or without OI. Develop your first mate and crew to support you as you captain your own life.