OIF E-News - January 2015 

In this issue:

Exercise the Mind, Body and Unbreakable Spirit®

From the OI Foundation

Information Center

OIF Advocacy Update: ABLE Act


Exercise the Mind, Body and Unbreakable Spirit®



HAPPY NEW YEAR from your friends at the OI Foundation! Our New Year’s resolution is to dedicate 2015 to exercising the Mind, Body and Unbreakable Spirit®. JOIN US!

Exercise your MIND – Take advantage of the resources and information at an OIF Regional Conference this year. The three meetings of the 2015 OI Foundation Regional Conference Program will be held in Los Angeles, CA in February 2015, in Stamford, CT in May 2015, and in Minneapolis, MN in October 2015. (More information below) 

Exercise your BODY- Take the 50,000 Laps Challenge
Rare Disease Day 2015 

Exercise your UNBREAKABLE SPIRIT®-  Participate in National Blue Jeans for Better Bones Day on Friday, February 27, 2015 in honor of Rare Disease Day! Contact Danielle at dcymber@oif.org to start planning!


Register today for the OIF Regional Conference in Los Angeles, California- February 7, 2015

The first in the 2015 series of regional conferences will be held on February 7 at the Shriners Hospital for Children in Los Angeles, California. Registration is filling up fast, so be sure to register and reserve your spot today! 

Regional conferences are one day meetings that are sponsored by the OI Foundation. They are designed to bring an overview of information about understanding and living with OI to cities all across the US. The 2015 series includes LA (February 7), Stamford, CT (May 16) and St. Paul, MN (Oct 24). Details for each meeting are posted on the OIF website under the Events Tab as they become available.  The 2016 series will feature 2 regional conferences and in July 2016 the OIF’s National Conference in Orlando, FL.


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From the OI Foundation


Impact Grant Applications Now Available!

Applications for Impact Grants are now available! Funded and administered by the Children’s Brittle Bone Foundation and the OIF, the Impact Grant program offers direct support to individuals and families by providing products or services that will greatly improve their quality of life. Items that have been awarded in the past include wheelchairs, orthotics, hearing aids, and modified vans.

Applications and eligibility requirements can be found at www.oif.org/impactgrant. Applications are due February 10. If you have any questions, please email impactgrants@oif.org


Fine Wines, Strong Bones

Winery at Bull RunJoin the OI Foundation for the 15th anniversary of its flagship fundraising event—Fine Wines, Strong Bones—at the Gaylord National Resort on Saturday, February 28, 2015. Enjoy an evening of food, wines from around the globe, hundreds of silent and live auction items and casino games. Your participation will help the OI Foundation continue its mission to fund research, provide medical information and support, develop new resources and increase public and professional awareness about OI.  Special discounts are available for groups: A single ticket is $75, a couple’s ticket is $130 (a $20 savings) or purchase a table for eight for $500 (a $100 savings.) Act quickly; tables are limited.

Take advantage of the OI Foundation’s play and stay package.  For $500, you will receive two tickets to Fine Wines, Strong Bones, a one-night stay at the Gaylord National’s amazing resort and breakfast for two at Pienza restaurant in the Gaylord on Sunday morning.  Sign up for this special package by January 16th or purchase your tickets to the event at www.oif.org/FineWines


Enter the OIF Good Stuff Sweepstakes!

swandolphinhotel-view-from-lake.jpgEnter the OI Foundation’s annual sweepstakes for your chance to win!

Prizes include: a 7-Inch Dual Screen Portable DVD Player (valued at $200); a 42” LED TV with HDMI cable (valued at $400); and a trip for four to the 2016 OIF National Conference, complete with four full-conference registrations and a room at the Walt Disney World Swan & Dolphin for three nights (valued at $1200).

The suggested donation is $5 per entry ticket, but there is no purchase necessary to win. For complete rules click here.

Good luck!





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From the OIF Information Center

Summer Camps

Although many of us are shivering in our heaviest winter coats, it’s not too soon to be thinking about summer camps. Many children’s hospitals and civic groups sponsor special camps that offer safe and fun experiences for children with medical conditions, including OI. If your child is interested in a day or sleep-away camp experience, now is the time to look into what is available in your area.

Camp Korey, located near Seattle, WA, is already accepting applications for their summer program. They offer several weeks that can accommodate children with OI. Camp Korey accepts applications from all over the US and the world.  If you would like to learn more about Camp Korey’s summer program check out their website: http://campkorey.org/camper-programs/summer-camp/.

Cold and Flu Facts

Did you know that cold and flu germs can survive on hard surfaces for 48 hours? To protect yourself from infection, continue to wash your hands frequently, cover your mouth and nose when you cough or sneeze and avoid people who are sick. Respiratory infections can become a serious health threat to children and adults who have OI, especially if they also have asthma.

Protect Your Hearing from Noise Damage

Noise-related hearing loss affects over 26 million Americans under the age of 60. It can come from extremely loud bursts of noise, but the most common problems develop slowly over time from ongoing exposure to loud noise. Audio players with ear buds, and power tools are often loud enough to cause permanent damage. Because OI can cause hearing loss, it is especially important for children and adults with OI to protect their hearing. Here are a few tips from the National Institutes of Health:

  • Turn down the volume on devices, especially if you wear ear buds or headphones.
  • Avoid noise—just walk away.
Block the noise by wearing earplugs or earmuffs.



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OIF Advocacy Update: ABLE Act

On December 16, 2014, Congress passed the most significant piece of legislation for Americans living with disabilities since the Americans with Disabilities Act of 1990.  The Achieving a Better Life Experience (ABLE) Act allows people with disabilities to save money in special bank accounts without jeopardizing their government benefits.  The money saved can be used for education, health care, transportation, housing and other essential expenses. This measure passed with overwhelming support from both Democrats and Republicans.  The Osteogenesis Imperfecta Foundation has been honored to stand with so many other advocacy organizations supporting the ABLE Act and we believe this new law presents an important opportunity for the OI community.  The ABLE Act will permit individuals with disabilities that have occurred prior to age to 26 to: 

  • Easily open a special ABLE savings account any state;
  • Deposit up to $14,000 annually under current gift-tax limitations;
  • Save as much as $100,000 in their newly created account without risking eligibility for Social Security or other government benefits;
  • Retain Medicaid coverage no matter how much money is deposited;
  • Earn tax-free income with tax-free withdrawals for qualified disability expenses.

 We are very pleased that the ABLE Act will be signed into law.

Read more about the ABLE Act HERE.


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 Osteogenesis Imperfecta Foundation

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