Osteogenesis Imperfecta Foundation

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OIF National Conference - Registration Opens Nov 1!
Upcoming Events
From the OIF Information Center
You Could Win!

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conf header 2018


OIF National Conference 2018 Registration opens

Wednesday, November 1, 2017!


Upcoming Events



OIF Regional Conference in Portland, Oregon - Online Registration Closes at the end of October!

There is still time to register online for the one-day OIF Regional Conference in Portland, Oregon on Saturday, November 11th on the campus of Oregon Health & Science University. The meeting registration fee is $35 per person and includes access to all sessions, lunch, and a social reception. Children 12 years old and younger are free to attend, but must be registered online. 

We are thankful to the meeting co-chairs, speakers, and the staff at OHSU for volunteering their time and expertise to make this meeting possible.

Register today to guarantee your space at this fun, family-friendly one-day OI educational program! The agenda overview, registration information, and additional meeting details are available at www.oif.org/regionalconferencePortland.



We can’t wait to see members of the OI community at our two upcoming Fine Wines Strong Bones Events! 

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Click here for more information!  Click here for more information!


From the OIF Information Center

evenings with geneticsEvening with Genetics in Houston, Texas

On Wednesday, November 15th, OI Foundation CEO Tracy Hart will participate in a panel with Dr. Brendan Lee in Houston, Texas at Baylor College of Medicine’s Evening with Genetics seminar “Partners in Progress:  Families and Scientists Catalyze Research for Rare Diseases.” The evening will begin with light refreshments at 6:30pm at the Children’s Museum of Houston, and the seminar will start at 7:00pm.

Registration is required. Seminar attendance is FREE. If you are in the Houston area, we would love for you to attend! Please visit www.bcm.edu/eveninggenetics for more information. 


Protect Yourself this Season with an Annual Flu Shot
Experts continue to say the best way to avoid the aches, fever, congestion and fatigue that comes with the flu is to get the annual flu shot. The flu shot reduces the likelihood that a person will get the illness by approximately 75%. It takes about 2 weeks for your body to develop antibodies against the flu, so it is important to take other common sense steps such as washing your hands often and thoroughly, avoiding touching your eyes, nose or mouth, and staying away from sick people. Children and adults living with OI, especially those with short stature, are considered to have a higher risk for complications from the flu.



Thank You to the Co-Chairs, Speakers and Participants of the 2017 Clinical Meeting on OI

raggio shapiro co chairOn October 5-7th, the OI Foundation welcomed 50 physicians, physical therapists, nurses, and clinic coordinators from nearly 20 OI Clinics across the United States and Canada to discuss the clinical care of individuals living with OI. Over two days, speakers shared research and expertise on topics such as bone biology, dental disease, hearing, pulmonary function, orthopedic management, pharmacologic treatment, and more. We were also fortunate enough to have OI community member Tracy Mulroy talk about patient perspectives of partnering with physicians to maintain optimal health. Thank you so much to OI Foundation Medical Advisory Council Members Dr. Jay Shapiro and Dr. Cathleen Raggio for their efforts to organize this important meeting! A more detailed recap of this meeting will be featured in the OIF e-newsletter for Medical Professionals. Visit www.oif.org/MedEd to subscribe to the medical education newsletter. 

Announcing a Newly Revised OIF Publication for Physical and Occupational Therapists, and More!

PT guide cover 2017With constantly evolving research and strategies in OI, the OI Foundation works hard to meet the high demand for information on OI from patients, families and medical professionals. The OI Foundation is thrilled to present the most recent publication revision: Physical and Occupational Therapists- Guide to Treating Osteogenesis Imperfecta. This guide is intended to serve as a tool for therapists of any level of expertise.

Strategies with a focus on safe handling, adaptive equipment, functional assessments, and self-care tasks are shared in this guide and applicable to parents, adults, nurses, educators, and more.

Click here for the PDF version of the guide.

If you have any questions or would like a printed copy of the guide, please feel free to contact the OI Foundation at (301) 947-0083 or bonelink@oif.org.

The OI Foundation is grateful to the physical and occupational therapists who contributed their ideas, expertise and support to this publication:

Frances Baratta-Ziska, PT, DPT, MS, PCS- Hospital for Special Surgery, New York, NY
Timothy Caruso, PT, MBA, MS, Cert. MDT- Invacare Corporation, Elyria, Ohio;
Community Physical Therapy, Addison, IL; the Kids Equipment Network, NFP, Itasca, IL
Lisa Drefus, PT, DPT- Hospital for Special Surgery, New York, NY
Maureen Donohoe PT, DPT, PCS- Nemours, A.I. DuPont Hospital for Children, Wilmington, DC
Christopher Joseph, DPT- Kennedy Krieger Institute, Baltimore, MD
Kathleen Montpetit, OT, MSc- Shriners Hospital for Children- Canada, Montreal, Qc

You Could Win!

amazon echoThe OI Foundation’s Good Stuff Sweepstakes is now open! By entering the Good Stuff Sweepstakes, you are helping the OI Foundation produce new information resources, fund research, provide answers to more than 7,000 requests for information per year, and facilitate support groups around the country. Visit www.oif.org/sweepstakes and enter for a chance to win one of 3 amazing prizes before January 12, 2018. Early Bird entries (received or postmarked before December 1, 2017) will also be eligible to win a $200 American Express Gift Card.

Make your home a “smart home” with the Amazon Echo and TP-Link Smart Home Starter Kit, one of our three amazing sweepstakes prizes. The TP-Link Starter Kit includes a light switch, light bulb and outlet. Not only will you be able to schedule when your lights turn on and off from your phone, but you can use your voice to ask Amazon Echo’s Alexa to adjust them for you. Alexa works with TP-Link and several other brands that will allow you to fill your home with products that will keep your house safe, energy proficient and accessible just by talking.

For more information on the Good Stuff Sweepstakes including rules & regulations, deadlines and other prizes please visit www.oif.org/sweepstakes or call 844-889-7579.

Osteogenesis Imperfecta Foundation

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Phone: (301) 947-0083  or  (844)-889-7579  |  Fax: (301) 947-0456

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