Osteogenesis Imperfecta Foundation

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In this issue...

National OI Awareness Week was a success!
OIF Information Center
Updates From the OIF 
OIF Advocacy Update

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National OI Awareness Week 2019 was a Success!

AW recap 2019

Each year during National OI Awareness Week, OI community members request state proclamations, hang flyers, hold events, and share social media posts to raise OI awareness. Check out some of the highlights of OI Awareness Week below!

  • We reached over 200,000 people on social media throughout National OI Awareness Week. Thank you for liking, sharing, and retweeting!
  • We received 16 official National OI Awareness Week proclamations. Click here to view all of the National OI Awareness Week proclamations.
  • More than 60 OI community members created National OI Awareness Week Facebook Fundraisers. OI Awareness Week fundraisers brought in more than 250 individual donations in support of the OI Foundation! You can create your own Facebook fundraiser at any time here.
  • We raised OI awareness across the globe on Wishbone Day. To view the OI Foundation's #SHAREforAWARENESS Wishbone Day posts, click here.
  • OI community members celebrated National OI Awareness Week by holding and attending OI awareness events across the country
    • 15 OI community members held Bone China Tea events
    • 10 schools and offices held Blue Jeans for Better Bones Day events
    • OI community members attended the Strong Bones Boston Gala (Framingham, MA), Unbreakable Spirit Dance (Buzzards Bay, MA), DC, MD, VA Support Group Meeting (Washington, DC), 7th Annual Wishbone Day Potluck Picnic (Port Orchard, WA), 2nd Annual Wishbone Day Awareness Walk for OI (Berkley, MA), Awareness Week Fundraiser at Odyssey Logistics (Charlotte, NC)

Raising OI awareness in your community is important year-round! To raise awareness by planning an event or holding a Blue Jeans for Better Bones Day in your office or school, visit www.oif.org/bjbb or contact Jessica at jskidmore@oif.org or 301-947-0083

For more information about National OI Awareness Week, visit www.oif.org/AwarenessWeek.

OIF Information Center

clinic directory header

OI Clinic Directory - Available Online
The OI Foundation maintains a list of hospitals and clinics that offer coordinated treatment for people living with OI and other bone disorders. Some clinics see only children, while others see children and adults. Individuals who must travel to an OI Clinic also need a local primary care provider who will handle their routine and emergency needs. Visit the 2019 OIF Clinic Directory at www.oif.org/ClinicDirectory to find a list of OI clinics, clinic contact information, the number of individuals with OI seen last year, and the services that each clinic offers.

The OIF Information Center can also help you locate a general physician, dentist, or specialist in your area who has experience treating OI. For more information, please email Bonelink@oif.org.


Journal of Bone and Mineral Research
Osteogenesis Imperfecta: Mechanisms and New Therapies

Supporting and sharing research is an important part of the OI Foundation’s mission. Many of the OI Foundation's Medical Advisory Council members and researchers publish their work to move OI research forward and improve the quality of life for those living with OI. To view recent publications about OI, visit the Journal of Bone and Mineral Research’s newly updated digital collection on the Wiley Online Library. 


Interested in Learning More about Local Camps for Your Family?

When the word “camp” comes up, many children and adults think about traditional, outdoor living, sleep-over camps. There are actually many different types of camps, classes, tours and summer experiences that are designed for children and adults living with disabilities. An increasing number of traditional residential camps are tailored specifically for children and families affected by osteogenesis imperfecta. Popular camps in the Unbreakable Spirit® community include the Center for Courageous Kids (Scottsville, KY), Camp Korey (Mt. Vernon, WA), Camp Twin Lakes (Atlanta, GA), and the Hole in the Wall Gang Camp (Ashford, CT). Camp activities may include swimming, bowling, cooking, theater/performing arts, boating, fishing, arts and crafts, and more. Scholarships or financial assistance may be available for camps or classes.

If you are interested in learning more about summer camps, be sure to check with your local children’s hospital or the nearest Shriner’s Hospital for information about programs that would be suitable for a child with OI. The American Camp Association, your local YMCA, or your city’s department of recreation may also have resources for children and families interested in participating in a summer experience this year


Updates from the OI Foundation

Medics on the March

medics vid photo

Some of the OI community’s most dedicated supporters are OI expert physicians and medical professionals. A few weeks ago, 16 OI experts went above and beyond to raise OI awareness and support the OI Foundation by participating in the Medics on the March event. We are so grateful for this group of incredible doctors. Show your support for the Medics on the March participants at www.oif.org/MedicsontheMarch

Tampa strong bones flyer 2019

Purchase your tickets to Strong Bones Tampa today!

Upcoming OIF Regional Conferences

The OI Foundation is bringing the Uniting Unbreakable Spirits Regional Conference program to three more cities in 2019. These one-day meetings give families across the United States the opportunity to take part in educational sessions providing information on understanding, managing, and living with osteogenesis imperfecta.  Regional Conferences will be in Atlanta, Georgia on August 3; Sacramento, California on August 10; and Wilmington, Delaware on October 26

For more information, please check OIF Regional Conference or email questions to bonelink@oif.org. More details and links to registration will become available for all 3 Conferences in the coming weeks.

Atlanta Regional Conference Button 2019  sacramento regional buttonWilmington Regional Conference Button 2019


OIF Advocacy Update

The House Appropriations Committee has approved the FY 2020 spending bill for the departments of Labor, Health and Human Services, and Education. The committee included $41 billion for the National Institutes of Health (NIH), an increase of $2.2 billion over 2019 and one of the largest increases in years. 

The NIH funding includes $634.6 million for the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), an increase of $29.6 million over 2019 funding levels, and over $113 million more the president’s budget request.

In addition to funding the nation’s health agencies, Congress has also turned its attention to a handful of major health policy issues, with sweeping legislation beginning to take shape in both chambers.

Since the beginning of the 116th Congress in January, a number of powerful congressional committees have held hearings on the high cost of prescription drugs, hearing testimony from patients, providers, and drug manufacturers. Legislators from both parties have filed dozens of bills aimed at increasing market competition and price transparency while preserving innovation. Some of these bills have already received floor consideration in the House, with more votes expected in the coming months.

Lawmakers are also considering legislation that would address “surprise medical bills.” Draft bipartisan bills in the House and Senate would limit the ability of hospitals that are in a patient’s insurance network to charge the patient more when one or more of their treating providers is out-of-network.

Osteogenesis Imperfecta Foundation

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