OIF E-News - November 2014

In this issue:

From the OI Foundation

OIF Holiday Giving

From the Information Center

OIF Advocacy Update


From the OI Foundation



2015 OI Foundation Regional Conferences

The OI Foundation is pleased to announce that three cities have been selected for the 2015 OIF Regional Conferences.  A one-day meeting will be held in Los Angeles, CA in February 2015, in Stamford, CT in May 2015, and in Minneapolis, MN in October 2015.  A complete registration for any regional conference will cost $35 and will include access to a full day of information packed with educational sessions and social activities.  Online registration is now open for the OIF Regional Conference in Los Angeles on Saturday, February 7, 2015! Please visit the website (www.oif.org/regionalconference) for more information about the meeting agenda and registration details. Space is limited. Register today!

Regional logo

Impact Grants Coming Soon!

Applications for Impact Grants will be available on January 5, 2015! Funded and administered by the Children’s Brittle Bone Foundation and 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. Remember, applications will not be available until January 5 and the deadline for submitting applications is February 10. If you have any questions please email impactgrants@oif.org


Year End Giving

We are so fortunate at the OI Foundation to have the continued support of the OI community. Because of your generosity, the OI Foundation is able to continue to fund important research, programs and services for families and individuals living with osteogenesis imperfecta. The following letter was recently sent out to our supporters. Please take a moment to consider giving a gift to the OI Foundation so that we can continue providing a high level of service to the OI community. You can make your gift by visiting www.oif.org.

Click here to view the End of the Year letter. Thank you!

A Salute to Family Caregivers

care.pngNovember is National Family Caregivers Month and a time to honor the millions of people who selflessly care for a loved one who has an illness or disability.  It is a time to appreciate and celebrate the work of so many parents and other family members who make a difference in the lives of people living with OI.  Caregivers often take on so many responsibilities that they neglect taking care of themselves.  Whether you are caring for a child, a parent, a spouse or a friend, it is critical that you keep yourself healthy and happy.  When you take care of yourself, you become an even better caregiver. The Family Caregiver Alliance advises that all caregivers develop a support network of friends and service providers to avoid some of the negative health effects that are often associated with challenging caregiving.  For more information about general resources for family caregivers, visit their website at www.caregiver.org.   



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'Tis the Season of Giving

givingtuedayThe OI Foundation is excited to take part in #GivingTuesday, the National Day of Giving, on DECEMBER 2, 2014. We need your help! Participate by creating a fundraiser page (Make sure you set your fundraising “Cause” to the OI Foundation, Inc.!) or by donating to the OI Foundation on #GivingTuesday!


amazonsmileLooking for the newest technology, books, clothing, toys, jewelry, shoes, movies and more? Find the perfect gift for everyone on your list on AmazonSmile for Osteogenesis Imperfecta, Inc.! For every online purchase you make, Amazon will make a donation to the OI Foundation! Click here to get started on your holiday shopping! 


Give the gift of stock this holiday season! Contact the OI Foundation for more information! 


Enter the OIF Good Stuff Sweepstakes!

Enter 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.  Entries received before December 8th will be eligible for the early bird prize of a $200 gift card to Amazon!  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 Information Center

Be a Safe Patient in the Hospital

The US Centers for Disease Control and Prevention recently published a list of suggestions for staying well in the hospital.

  • Don’t be afraid to ask questions of your doctor and other caregivers.
  • Wash your hands frequently and make everyone else wash their hands before touching you.
  • Ask your doctor if tests are being done to ensure that you’re getting the appropriate medicine at the appropriate dose. (OI adults who are short in stature should remind anyone who is prescribing medicine that the dose should match their weight and not their age. The standard adult dose will be too much in many cases.)
  • Know the warning signs of infection and report them to your doctor and nurse.
  • Alert your care team if you have diarrhea three or more times within 24 hours.


Protect Your Hearing from Ototoxic Drugs

The word “Ototoxic” refers to anything that has the potential to harm hearing or balance. Symptoms of ototoxicity can include: developing tinnitus, fullness or pressure in the ears, new or worsening hearing loss, development of vertigo. Factors that contribute to having an ototoxic reaction to a medication include pre-existing hearing loss, age, dose, length of treatment, and interactions with other drugs. This kind of drug side effect is not well understood, so be proactive about your health.

  • INFORM your doctors and pharmacist about your hearing/balance issues.
  • DISCLOSE all drugs or supplements.
  • DISCUSS benefits and side-effects of current and new medications.

A longer article, based on Dr. David Vernick’ s presentation at the 2014 OIF National Conference is in the winter, 2014 issue of Breakthrough.


Open Enrollment for Health Insurance

Open enrollment for the Health Care Marketplace Insurance plans runs from November 15 until December 15. This is the annual opportunity to make changes to a plan you already have in place, pick a new plan or enroll for the first time. Many changes have been made to the plans and the websites since last year. A useful guide by Families USA on the questions to ask when buying or renewing health insurance can be found at the Families USA website.



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OIF Advocacy Update

OIF Urges Congress to Approve Tax Free Savings Accounts for Disability Expenses

With the election season behind them, Congress has returned to Washington to wrap up its work for the year.  One of the issues on the to do list is critically important to the OI community: The Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647).

The ABLE Act will allow people with disabilities to create “ABLE accounts” that resemble the qualified tuition programs—often called “529 accounts”.  Earnings on money in an ABLE account would not count as taxable income and deductions could be made for “disability” related expenses, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.  And, money saved in ABLE Account would be tax exempt and not counted as part of any asset limits for eligibility to federal programs such as SSI or Medicaid. 

The ABLE Act is sponsored in the U.S. House by Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX) and in the U.S. Senate by including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC).  The legislation enjoys overwhelming bipartisan support in the Senate with 74 co-sponsors and 380 co-sponsors in the House.  

The incredible amount of support does not guarantee that the bill will pass this year.  The legislation was on the schedule to be passed in September but time ran out and Congress left town without voting on the bill. We can’t let that happen again.  Congress has only a few more weeks before leaving for the year and any legislation not passed will need to be introduced and considered again.    

The OIF advocacy team has been urging Congress to pass the ABLE Act before the end of the year and we encourage you to contact your Senators and House Member to deliver the same message.  Locate your representatives by visiting: www.house.gov and www.senate.gov.  For more information about the ABLE Act, click here.

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 Osteogenesis Imperfecta Foundation

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