Thank You for Participating in National OI Awareness Week!

Save the Date: Birdies and Bogies!

We hope you will join us for the 8th Annual Birdies and Bogies for Better Bones on Monday, August 12 at Belmont Country Club in Ashburn, VA. Birdies and Bogies for Better Bones is an annual OI Foundation sponsored golf tournament to raise money and awareness for OI. In addition to golfing on an Arnold Palmer Signature Golf Course, the event includes prizes for top golfers, a reception with great food and drinks, and many other contests and raffles! Check www.oif.org soon for registration information.

Questions? Please email Erika at ecarter@oif.org. 

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From the Information Center 

Plan Ahead for Summer Travel

Summer vacation often means traveling to visit friends and relatives; sightseeing in the US; or maybe an international travel adventure. Whether you’re going across your state or across the ocean, there are things you can do now to ensure a happy, healthy trip.

• Carry a letter from your doctor stating the OI diagnosis.

• If you are flying, check the US Transportation Security Administration (TSA) website for the latest information about airport screening www.tsa.gov. Under “Traveler Information” there is a section for people with medical conditions/disabilities.

• If you are taking a train, check the Amtrak website www.amtrak.com for travel tips and a list of services.

• Check the website for all of the hotels and sights you wish to visit to see if they are accessible.

• Add fracture first aid materials to your first aid kit. Include latex free wraps and bandages if needed.

• Carry a list of your doctors and their phone numbers.

• If children, teens or young adults are traveling alone, consider enrolling in one of the medical alert programs that provide bracelets or necklaces.

If you are traveling outside the US you will also want to:

• Check the International Association for Medical Assistance to Travelers (www.iamat.org) website for travel tips and links to a list of English-speaking physicians overseas.

• Verify that your health insurance policy covers overseas travel; talk to your travel agent about purchasing travel health insurance and/or evacuation insurance.

• When possible bring along a travel companion who is familiar with OI, who knows your needs and who can assist you in an emergency.

Save the Date!

The OI Foundation is pleased to announce that there will be a One Day Regional OI Conference in Tampa, FL on Saturday, November 2, 2013. Look for more details and registration information in the coming weeks.

On March 1, 2013, “sequestration” went into effect, causing about $85 billion to be cut from the federal budget.  Due to these across-the-board cuts, the National Institutes of Health (NIH), the nation’s biomedical research agency, had approximately $1.6 billion of its budget cancelled.

The direct impact of sequestration on the OI community is not entirely clear at this point, but the OI Foundation works very closely with the NIH on OI-related research and the funding cuts at NIH will potentially hurt OI research projects.  In response to sequestration, the NIH may not be able to issue continuation funding awards to some existing grantees, or may need to negotiate a reduction in the scope of the award.  In addition, it is likely that plans for new grants may be re-scoped, delayed, or cancelled depending on the nature of the work and the availability of resources.  In general, sequestration likely means that fewer grants will be made and less money will be awarded per grant, leaving good science unfunded.

While the OI Foundation will continue to move forward with its research and advocacy agendas regardless of sequestration, the aggregate impact of these budget cuts looks to be increasingly severe over time.  Indeed, under current law, sequestration remains in place through the year 2021. 

The OI Foundation encourages its members to contact their Members of Congress and urge them to find a solution to budget impasse, reverse sequestration, and restore the NIH’s budget so that quality science can be funded and a therapy for OI can be identified.

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