Meet Susie!


Susie Wilson (L), OIF Chief Executive Officer, Tracy Hart, and Jamie Kendall at the 2010 National Conference on OI


Susie Wilson
Fort Myers, Florida

Event organizer, fundraiser, peer reviewer, former OIF board member, support group leader.

The saying “if you want something done, ask a busy person,” certainly seems to apply to Florida resident, Susie Wilson.

Susie was diagnosed with Osteogenesis Imperfecta Type III/IV in 1968 when she was born with two broken legs and a broken arm.  She had Rush rods inserted in both femurs when she was eight.  Several subsequent replacement rods were necessary during the next ten years due to fractures.  Her most recent Rush rod surgery was in 2010.

“I think I was actually very, very lucky to have had orthopedic surgeons who were knowledgeable about treating OI,” she said.  

And for this, and for many other reasons, Susie believes in giving back to others.

“Growing up, I was the only child I knew with OI,” she said.  Things like OI support groups and social media sites like Facebook and Yahoo did not exist.”

“Volunteering for me is a way to reach out and support kids and families affected by OI,” she believes.  

While attending Manhattanville College in New York in the early 1990s, Susie decided to take advantage of the fact she was the only student on campus with a disability.

“I was fortunate to live in the same dorm wing as the basketball guys.  They were always offering to help me reach things.  Really, many of the students were very aware and considerate of my disability,” she recalls.

But that also gave her an idea.

“I thought why not organize a way to promote a greater understanding and awareness of the everyday issues people with disabilities face.”   

A committee was formed and a Disability Awareness Week motto adopted:

Experience the reality. Live. Learn. Accept.

A number of wheelchairs were loaned to the school and students were encouraged to use them to get to and from class.  She even challenged the men’s basketball team to compete in an all-wheelchair basketball game with a group of disabled players.

“The boys on our team were convinced they were more than up for the wheelchair challenge, and predicted that these guys in wheelchairs stood little chance of competing against a college team,” she recalls with a laugh.

Manhattanville lost.  

“I still hear from my college friends now and then telling me how much fun they had that week and how it helped change their thinking about people with disabilities,” she said.

Susie continues to raise awareness for OI.  For the past 14 years, she has co-chaired the annual Osteogenesis Foundation’s Bone China Tea event with her mother, Jennifer.  The event has raised nearly $316,000 to support the Foundation’s programs and research -funded efforts.

Susie was also one of two OI Foundation representatives who recently participated in the evaluation of research proposals submitted to the Peer Reviewed Medical Research Program sponsored by the Department of Defense. 

Currently, she co-chairs the Florida OI Support Group.  The 35-40 person support group meets two to three times a year to discuss various topics related to living with OI.

“One of the most exciting things about our support group is actually meeting the friends face-to-face that for so long I had corresponded with on the internet,” she said.

“Our get-togethers are both fun and informative. We gather to enjoy and renew friendships, share information and from time-to-time hear presentations by guest speakers,” she said.

Some of the recent topics the Florida OI Support Group has addressed include treatment options for OI, advocacy issues and home and van modifications.   Guest speakers have included executive staff members from the OI Foundation as well as renowned OI medical experts.  Drs. Jay Shapiro, Director of Kennedy Krieger Institute’s OI Department in Baltimore, and David Rowe, Director for Regenerative Medicine and Skeletal Development at the University of Connecticut Health Center, have both been guest speakers at the Florida group. 

During the 2000 biennial OI Conference on OI in Dallas, Susie was awarded the Thelma Clack Lifetime Volunteer Award.  The award is given annually to the one volunteer who best exemplifies the qualities of a loyal and dedicated volunteer of the OI Foundation.

The Conference is invaluable not only for its presentations and updates, but for the support it offers families, she believes.  (The 2012 National Conference on OI will be held on July 13-15 at the Crystal Gateway Marriott in Arlington, VA).  

When not volunteering or working full- time for a medical insurance billing company, she enjoys doing cross stitch embroidery, scrapbooking and socializing with friends. 

Susie is now fully recovered from a leg fracture as a result of a serious car accident 15 months ago.  

She is back at work, volunteering and her spirit remains unbreakable.

If you are interested in joining the Florida OI Support Group, contact Susie at or 239.482.6892. She’s looking forward to meeting you!

CFClogo Medical Research Charities logo nhc logo nord-member-org.300x100.png Medical Research Charities logo Medical Research Charities logo