OIF E-News - July 2014

In this issue:

2014 OIF National Conference

National Unbreakable Spirit® Walk and Wheel

From the Information Center

OIF Advocacy Update


 2014 OIF National Conference, August 1-3 in Indianapolis, Indiana

The OIF National Conference in Indianapolis is only a few weeks away!

The 2014 OIF National Conference will feature engaging forums, valuable information sessions, influential speakers and fun social events with new and old friends. Check out the 2014 OIF National Conference Program here!

After arriving and checking in to the hotel, pick up your conference materials from the OIF Registration and Information desk located in the White River Prefunction area. The OIF Registration and Information Desk will be open during the hours below:

Thursday 7/31 2:00pm-4:00pm
Friday 8/01 8:00am-3:30pm
Saturday 8/02 8:00am - 4:00pm
Sunday 8/03 8:30am - 4:00pm 

Still need to register? On-site registration will also be available at the OIF Registration and Information Desk.

Child Registration-12 months to 12 years old $195
Teen Registration-13 years old to 17 years old $230
Adult Registration-18 years old and older $230    

If you would like to participate in the National Unbreakable Spirit® Walk and Wheelmeet us for warm-ups at the Event Center Drive hotel entrance at 4:00pm.


Indians

You don't want to miss this! There are still a limited number of tickets available for Conference attendees to attend the Indianapolis Indians baseball game on the night of Saturday, August 2nd! Wear your conference t-shirt and enjoy a night at Victory Field! To request tickets, contact the OIF at conference@oif.org. Please specify if you need accessible seating.

 

All medical consultation requests that we have received have been filled. Only a few openings for appointments with one of the geneticists are still available. The last day to request a geneticist appointment is July 21st. If you have a scheduled appointment and need to cancel, please let us know as soon as possible. Email bonelink@oif.org if you have any other questions.

Applications are still available for the 2014 OIF National Conference Talent Show! If you have a special talent that you would like to share, please sign up! Applications are available on the OIF conference website, in this e-news, and shared through the OI Foundation social media accounts. You must sign-up in order to participate and must be a conference-registered attendee. Do not forget, acts should be no longer than two minutes. The Talent Show will take place Friday, August 1 at 7:30pm, followed by a Talent Show After Party. A rehearsal will also take place prior to the show. Please contact Susie Richard at susierichard71@gmail.com if you have any questions. *Fill out the Talent Show form here* 

REMINDER: You MUST be registered and wearing a Conference name badge to attend Medical Consultation Day, the Pre-Teen or Teen Centers, breakfast, and any of the 40+ sessions.  Also, you must have a ticket or namebadge to attend the closing dinner and dance. 

National Unbreakable Spirit® Walk and Wheel

We are very excited to see hundreds of members of the OI community come together and take Indy by storm as we walk and wheel along the Canal Walk at White River State Park. 

You can register for the Walk-n-Wheel in three simple steps:

 1)      REGISTER as a participant at www.oif.org/WalkAndWheelIndy.  When you register, you can either opt to participate as an individual or create/join a team. All attendees over the age of 3 must register for t-shirt and waiver purposes. 

2)      RAISE FUNDS for the OI Foundation by personalizing your participant page with your story and sending it to your entire network.  It’s easy for friends and family to support you.  They can either go online by visiting your personal web page and you can watch your personal fundraising thermometer rise, or you can download our Participant Packet which includes a pledge form that you can use to collect donations in person.  There is no cost to walk or wheel, however, participants who raise more than $25 will receive an official National Unbreakable Spirit® Walk-n-Wheel t-shirt. 

3)      CREATE A TEAM!  This option is a great way to come together with members of your support group, friends or even your family. One person can create the team as the captain and then everyone else can join in.  Teams that raise more than $500 will have a sign with your team name to carry with you on the course.

On July 31st, please come to the registration desk in the White River Pre-Function Area of the JW Marriott in Indianapolis (hotel staff or the interactive maps located throughout the building can help direct you) beginning at 2:00pm to turn in any checks or cash donations and receive your t-shirt.  We will try to have enough t-shirts for everyone in the correct sizes, but only individuals who register in advance will be guaranteed a shirt.  If your team has qualified for a sign, there will be a decorating station available to add your personal touch. 

Join us for warm ups at the Event Center Drive hotel entrance at 4:00pm and the Walk-n-Wheel will begin at 5:00pm.  There will be two course options – the long course will travel two miles along Canal Walk over the Old Washington Street Pedestrian Bridge and on to Military Park while the short course will be ½ a mile and go directly to Military Park where we will have an informal finish line celebration. 

If you have any questions, please contact Melissa Bonardi at mbonardi@oif.org.

Let’s show Indianapolis what 50,000 Lives, One Unbreakable Spirit® looks like!

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From the Information Center


Plan Ahead for Summer Travel

summer-fun.pngSummer vacation 2014 may mean traveling to the OI Foundation National Conference, visiting 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.
It is always a good idea to bring along a travel companion who is familiar with OI, who knows your needs and who can assist you in an emergency.

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OIF Advocacy Update

U.S. House of Representatives Approves Newborn Screening Legislation 

The U.S. House of Representatives approved by voice vote on June 24th "The Newborn Screening Saves Lives Reauthorization Act of 2014" (H.R. 1281). This legislation, which reauthorizes the nation’s newborn screening programs for another five years, includes several legislative provisions that aim to improve and streamline the process of adding new disorders to the federal recommended newborn screening panel.  

Newborn screening is a state-run, federally-supervised public health program that tests each infant born in the United States for serious but treatable heritable disorders. The federal government offers funding and technical assistance to the states through the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SAC), which is a federal committee comprised of national experts in newborn screening. The SAC is responsible for recommending to the Secretary of Health and Human Services which disorders should be added to the federal recommended newborn screening panel. The Secretary must formally approve a SAC recommendation to add a condition to the federal newborn screening panel; each state is expected to follow the federal panel and test each newborn for the full list of disorders.

At present, 31 disorders are on the federal panel. OI is not presently on the panel, largely because it does not meet the SAC’s stringent requirements for being “treatable.” The OI Foundation is very supportive of the legislative provisions included in H.R. 1281, which will rework the federal newborn screening program to better facilitate the addition of new disorders to the screening panel.  

The next step for H.R. 1281 is to secure Senate passage, which is very likely to occur within the next month. After Senate approval, the legislation must be signed into law by the President. The Obama Administration has signaled that they will sign the bill once it is approved by Congress.

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 Osteogenesis Imperfecta Foundation

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