What an amazing weekend! The 2014 OIF
National Conference took place August 1-3 at the JW Marriott in Indianapolis,
IN. Throughout the weekend, over 35 experienced speakers shared
information and led discussions on over 40 topics carefully selected for those
interested in Type 1, Adult, Young Adult and Parent information. Over 500
conference attendees took advantage of the one-on-one medical consultations,
age and gender specific forums, informative sessions and enjoyable social
New and old friends of all
ages participated in the National Unbreakable
Spirit ®Walk-n-Wheel, Adult Happy Hour, OIF National
Conference Talent Show, Cake and Ice Cream Talent Show After-party, OI Night at
the Indianapolis Indians game, Closing Dinner and Dance and more!
At the Closing Dinner, the OI Foundation recognized Dr.
Francis Glorieux with the OI Foundation Humanitarian Award for his outstanding
commitment to people with osteogenesis imperfecta. The Foundation’s
Humanitarian Award is given to individuals who have devoted their own lives to
improving the lives of people living with OI. Only two have been awarded in the
past, one to Dr. Ed Millar and one to OIF founder, Gemma Geisman. These
visionaries have created scientific breakthroughs,
affected public policy, improved orthopedic and rehabilitative treatments and
mobilized a community to raise awareness about OI.
Dr. Glorieux, Chairman of the
OIF’s Medical Advisory Council, is currently an Emeritus Professor at McGill
University. Among many accomplishments, Dr. Glorieux developed a model center
using a multidisciplinary approach to treating OI; trained physicians from all
around the world; and built a career that combined patient care and research.
He is the author or editor of many publications including the OIF’s Guide to OI
for Pediatricians and a contributor to the latest text book on OI. He is a
Principal Investigator for the OIF’s Linked Clinical Research Center program
and continues to consult with doctors and researchers all around the world. Dr.
Glorieux’s sincere interest in patients and exceptional investigative skills
make him a role model for the modern clinician-researcher.
The Osteogenesis Imperfecta
Foundation thanks Dr. Glorieux for his leadership and his never ending
commitment to children and adults living with OI.
Check out the photos from the
2014 OIF National Conference weekend in the OIF Facebook Photo Album – Celebrate You! OIF
National Conference 2014
Thank you for your participation in the OIF
National Conference! We look forward to seeing you at the 2016 OIF National
Conference in Orlando, Florida at the Walt Disney Swan and
National Unbreakable Spirit® Walk and Wheel
On Thursday, July 31st,
over 250 members of the OI community came together to kick-off our National
Conference weekend with the National Unbreakable Spirit®
Walk-n-Wheel for OI! Beginning at the JW Marriott, participants walked or
wheeled one of Indianapolis’ most beautiful landmarks, the Canal Walk of White
River State Park. A local DJ and a clown from Shriners Hospitals for
Children got the festivities started before handing the microphone over to OIF
Board of Director’s President Mark Birdwhistell and Indianapolis Attorney Greg
Fehribach who welcomed participants and – with the help of over a dozen
children – cut the ribbon to start the group off on the mile long route.
We would like to thank our sponsors: Health & Hospital Corporation of
Marion County; Firestone; Eskenazi Health; Streetscape Co; BSA Life Structures;
Shriner’s Hospital for Children Chicago; the Indianapolis Pacers; CSO
Architects; the Indianapolis Indians; and John Klipsch Consulting along with
the 28 teams that were formed for helping us take Indianapolis by storm and
making the Unbreakable Spirit® of the OI community known!
If you would like to hold your own Unbreakable
Spirit® Walk-n-Wheel or you are interested in helping us plan our 2016 National
Unbreakable Spirit® Walk-n-Wheel in Orlando, please contact Melissa Bonardi at email@example.com.
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From the Information Center
Back to School
Season- for Parents
Frequent communication with
your child’s teacher is an important year-round strategy for helping your child
who has OI be a happy and successful student. The beginning of the school
year is especially important for parents to meet new school staff and review
information about your child’s physical strengths and needs. Some suggestions
from parents regarding how to be proactive about the back to school season are
- Walk through your child’s planned routes to the
playground, auditorium, or restroom to help identify areas that will be
difficult for crutches, walkers, or a wheelchair.
- Decide how you want OI explained to your child’s
- Brief the school staff about any changes in your
child’s condition over the summer due to surgery or accident.
- Establish a written policy in regard to handling your
child and the use of his/her equipment. Decide who will be called
when a fracture is suspected or your child is in pain. Keep an emergency
contact list in an established place for substitute teachers, school
nurses and other school personnel.
- If your child has an aide, discuss the role the aide
should play to ensure the child’s maximum participation in classroom instruction,
physical independence, and peer socialization.
If the school staff has any
questions about OI or how to develop plans for working with your child, give
them contact information for the OI Foundation’s Information and Resource
Pediatric to Adult Medicine- for Young Adults
A pediatric transition team
from Nemours Alfred I. duPont Hospital for Children in Delaware recently
produced a series of videos titled “Becoming an Adult” for youth and young
adults with special health care needs and their families. The video
series covers topics such as self-advocacy, independent living, vocational
rehabilitation, and other community-based resources related to transitioning
health care needs. The videos are closed captioned, and can be viewed
online and on the YouTube web/mobile phone application. Click on the
links below to view the videos.
Will I Do After High School
and Financial Planning
More Responsibility for My Health Care
Will I Live After High School
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