OIF E-News - September 2014

In this issue:

New Regional Conference Program

From the OI Foundation

From the Information Center

OIF Advocacy Update

 Uniting Unbreakable Spirits Regional Conference Program


Unbreakable Spirit tree

At the recent OIF National Conference, the OI Foundation announced the launch of a new regional conference program in effort to make resources more readily available to the OI community. The “Uniting Unbreakable Spirits” Regional Conference program will help bring resources and information to families and individuals living across the United States.

Small one-day meetings in multiple regions will give families the opportunity to take part in social activites and informational sessions concerning understanding, managing and living with osteogenesis imperfecta.

There will be three OIF Regional Conferences during 2015. Keep an eye out for more information about the February 2015 “Uniting Unbreakable Spirits” Regional Conference in Los Angeles, California! 

From the OI Foundation

National OI Awareness Week 2015 is May 2-9, 2015!

During National OI Awareness Week 2014, the OI community proclaimed OI Awareness Week in 13 states, received a National OI Awareness Week Resolution from the House of Representatives, held nationwide events with over 2,000 participants, displayed over 400 OI Awareness Week posters and reached over 300,500 people through social media! Keep an eye out for our #SHAREforAWARENESS and #OIAwarenessWeek2015 posts!

We challenge the OI community to raise even more awareness during National OI Awareness Week 2015- we can do it! To start planning an Awareness Week event or to take part in National OI Awareness Week Blue Jeans Day on Friday, May 8, 2015, contact Danielle at dcymber@oif.org.

Stay in the loop! For more information about National OI Awareness Week and the OIF, “Like” the OI Foundation Facebook page and follow @OIFoundation on Twitter! 

Volunteer of the Year

Know someone who deserves to be named Volunteer of the Year for their dedication to the OI Foundation? Let us know! We are so thankful for each and every volunteer and participant who provide us the support we need to help improve the lives of those living with OI. Volunteer of the Year is an award designed to recognize those who truly go above and beyond. Help us recognize these outstanding citizens by nominating a volunteer who deserves some gratitude.

Please submit OIF Volunteer of the Year Nomination Forms to Danielle Cymber at dcymber@oif.org by October 17, 2014!


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From the Information Center

Health Alert – Dangerous Respiratory Virus

The national news media is reporting that a serious respiratory illness in a very short time sent more than a thousand children to the hospital in Missouri, Kansas, Illinois, Kentucky, Iowa, Colorado, Ohio, Oklahoma, North Carolina, and Georgia. This illness is caused by a particularly aggressive respiratory virus that health officials fear will spread rapidly. The virus, called an enterovirus, is related to the virus which causes the common cold. Symptoms start out like a cold – runny nose, sneezing, and coughing. But wheezing and other signs of shortness of breath come on quickly. This virus can be particularly dangerous for children who have asthma or other respiratory problems.

The OI Foundation asked its medical advisors what this means for people who have OI. Dr. Hollis Chaney, pediatric pulmonologist at Children’s National Medical Center in Washington, DC advises everyone who has asthma or recurrent bronchitis or who is prone to pneumonia to be on the alert. If a child develops cold symptoms, parents should start their “sick plan” right away, and if symptoms get worse, see a doctor immediately.

Dr. Robert Sandhaus, a pulmonologist in Denver, CO, site of one of the major outbreaks, adds that children, teens and adults should be sure to take their asthma medications regularly and to contact their doctor at the first sign that medications are losing their effectiveness.

Both doctors stress that the first line of defense is to avoid people who are ill and to wash hands frequently and thoroughly.

This is extremely important to the OI community because of the variety of breathing (pulmonary) problems they experience. OI affects not only bones but also alters the structure of lung tissue and increases the potential for a serious breathing problem. Rib fractures, chest wall size and shape, kyphoscoliosis and short stature can make a breathing problem worse. Understanding that the lungs themselves are affected by OI means that respiratory health is important for everyone who has OI.

Research Announcement

The OI Foundation would like to bring a study to your attention. Adrienne Baez, a Master’s Degree student who has OI herself, is doing a survey about how people who have an obvious physical difference cope. It is titled “Body Image as a Moderator of Disability and Resilience.”  This online survey is estimated to take 30 minutes. You are eligible to take this survey if you meet the following criteria:

1. You have a diagnosis of osteogenesis imperfecta (OI).

2. You are age 18 or older.

3. Your first language is English.

For more information and to read the official announcement, go to the OIF website and click the Research Tab. If you would like to participate in this study go to http://tinyurl.com/OIdisabilitysurvey.          

Resource Reminder- Check out the Abilities Expo near you!

The Abilities Expo is a commercial enterprise that hosts informative workshops and exhibit halls for the community of people with disabilities, their families, caregivers, seniors, and healthcare professionals.  The exhibit halls are FREE to attend and have a wide range of products and services- from personal care items to accessible vehicles, and major home renovations.  The Expo travels to several cities throughout the year- New York, Chicago, Houston, Boston, Los Angeles, and the San Francisco Bay Area.  Visit their website (www.abilitiesexpo.com) to see if an Abilities Expo is coming soon near you!

National Conference Session Summaries

This year, many of the conference speakers provided handouts, or wrote short summaries or “Take Home Messages” for their sessions. These have been posted on the OIF website. To view them, go to www.oif.org, and click on the Events Tab. The summaries are listed on the bottom of the national conference page. Items continue to be added as they become available.

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OIF Advocacy Update

Congress appears to be on the verge of passing The Achieving a Better Life Experience (ABLE) Act of 2013, a bipartisan bill that would establish tax-exempt accounts to assist individuals with disabilities and their families in saving private funds for the purpose of paying for a variety of qualified disability-related expenses. The ABLE accounts are modeled after the tax-exempt 529 higher-education tuition accounts that are popular with many families across the country.

Like the 529 tuition accounts, an ABLE program would be established and maintained by a state government and ABLE accounts would have the same maximum annual contribution limits. The ABLE account funds could be used for qualified expenses which are made for the benefit of an individual with a disability who is a designated beneficiary of the account. Qualified expenses include:

  • Education: Tuition for preschool thru higher education and expenses for books, supplies, educational materials, tutors, and special education services.
  • Housing: Rent, purchase of a primary residence, mortgage payments, property taxes, and utility charges.
  • Transportation: Mass transit, the purchase or modification of vehicles, and moving expenses.
  • Employment Support: Job-related training, assistive technology, and personal assistance supports.
  • Health, Prevention, and Wellness: Premiums for health insurance; mental health, medical, vision, and dental expenses; habilitation and rehabilitation services; durable medical equipment; therapy; respite care; long-term services and supports; nutritional management; communication services and devices; adaptive equipment; assistive technology; and personal assistance.
  • Miscellaneous Expenses: Financial management and administrative services; legal fees; expenses for oversight; monitoring; home improvements, modifications, maintenance, and repairs at primary residence; and funeral or burial expenses.
  • Assistive Technology and Personal Support Services
The legislation has very strong bipartisan support in both the House and the Senate and there is an expectation that it could be brought up during the short September session or perhaps during the lame-duck session after the November election.

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 Osteogenesis Imperfecta Foundation

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