Osteogenesis Imperfecta Foundation
 


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In this issue...

OIF Events - April 2019
Updates from the OI Foundation
OI Awareness Week
OIF Advocacy Update



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OIF Events - April 2019

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Don’t miss out! Spots are filling up quickly for the 2019 OIF Regional Conference in Chicago, Illinois on April 13th.

This one-day event will be held at Shriners Hospitals for Children – Chicago. Hear Dr. Peter Smith, orthopedic surgeon and OIF Medical Advisory Council member, and other physician-speakers share information related to understanding and living well with OI. Meet members of the Unbreakable Spirit community in Chicago and beyond. More information and a link to registration are available at www.oif.org/RegionalConferenceChicago2019

 

Meet the Marchers 2019

The OI Foundation is lucky to have a group of dedicated physicians who generously donate their time to the OI Foundation and OI community. These physicians support OIF National and Regional Conferences, share information on the OIF podcast, lead OI research, and make themselves available to answer inquiries. Next month, several members of the OI physician community are taking that dedication one step further. The participating physicians will be taking part in the OIF's first-ever Medics on the March event, where they will hike 50 miles to raise OI Awareness!  

Support our incredible physicians and help them reach their collective goal of raising $100,000 - make a donation today at www.oif.org/MedicsontheMarch!

*Don’t forget to follow the OI Foundation’s Facebook page to see information about each medic and their progress on the march. 


Updates from the OI Foundation

 

susie zoe elijahBecome a Member of the OI Foundation Today

The OI Foundation counts on your membership to help fund research, provide information and support, develop new resources, and increase public and professional awareness about OI. In addition to supporting the work of the Foundation, membership gives you a voice in the OI Foundation’s future.

Click here to learn more about the OIF membership program.

 

Rare Disease Day

rdd logoRare Disease Day® takes place worldwide, on the last day of February each year, to raise awareness among policymakers and the public about rare diseases and those affected by rare disease. The OI Foundation celebrated Rare Disease Day on February 28, 2019 at the National Institutes of Health’s Rare Disease Day event. Thank you for following and sharing our Countdown to Rare Disease Day on social media, and for helping us reach more than 75,000 people on Facebook on Rare Disease Day!

 

Welcome to the OIF, Rachel!

Rachel Stivers headshotRachel Stivers is excited to join the OIF team as the new Manager of Professional Education and Outreach. Rachel graduated from George Mason University in 2016 with a degree in Criminology, Lawand Society with a minor in Women and Gender Studies. She comes to the OI Foundation from the National Evaluation System for health Technology Coordinating Center (NESTcc), which works with stakeholders across the medical device ecosystem to catalyze the timely, reliable, and cost-effective development of Real-World Evidence to enhance regulatory and clinical decision making. Prior to her time at NESTcc, Rachel was a Public Policy Associate at the National Health Council. As the Manager of Professional Education and Outreach, Rachel will provide opportunities for collaboration with medical professionals, attend medical professional meetings aimed at assisting medical professionals with providing care to their patients with OI, and be a point of contact for professional societies and organizations interested in OI research and treatment. Rachel is excited to be a part of the OIF Family and to work with members of the Unbreakable Spirit® community.

 

take charge toolkit listResource Reminder - Take Charge of Your Health

Looking for Information specifically for adults with OI?

The 'Take Charge of Your Health' tool kit is designed to help adults partner with their physicians to lead healthy lives. The materials include a Pocket Guide available from the OIF online store and a set of fact sheets that are posted on the OIF website at www.oif.org/OIF_Adults.

If you would like to receive a hard copy of these materials, please email Bonelink@oif.org or call the office at (301) 947-0083.


 

OI Awareness Week 2019

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National Osteogenesis Imperfecta Awareness Week is scheduled around Wishbone Day (the international OI Awareness Day on May 6th). During OI Awareness Week, we encourage the OI community, Foundation, and supporters to use fundraising events, social media, and individual state proclamations to raise awareness for osteogenesis imperfecta. 

How will you raise OI awareness during National OI Awareness Week?

1. PRINT the OIF Awareness Week Flyer to post around your community!

2. PROCLAIM National OI Awareness Week in Your State!

3. PLAN a Blue Jeans for Better Bones Day or Bone China Tea during National OI Awareness Week!

4. SHARE, Like, and Retweet Posts by the OI Foundation on Facebook and Twitter!

For more information about getting involved in Awareness Week, visit www.oif.org/AwarenessWeek.


bone china tea squareBone China Tea – May 8, 2019
Involve your friends and loved ones in making a difference!

Bone China Tea is one of the easiest fundraisers you can host. There is no event to plan! Instead, invite your friends and family to enjoy a cup of tea at home and make a gift to the OI Foundation with the money they have saved by not going out to a real affair. Money raised by Bone China Tea events help fund the OI Foundation's Regional Conferences program to bring up-to-date, medically verified information to members of the OI community in their own backyards.

There are three easy ways to host a Bone China Tea:

  1. Send Bone China Tea Invitations to your family and friends. To request invitations, contact the OI Foundation at jskidmore@oif.org. Often times, hosts include a personal update on how OI has affected them the past year.
  2. Create an online Bone China Tea webpage. Go to www.oif.org/BoneChinaTea and register as a host to create your own personal page. Share a photo, write your story and then share the link with your friends, family, and coworkers via email and social media.
  3. Create a Bone China Tea Fundraiser on Facebook. This is a great way to promote OI awareness across your social media friends and followers.

 


OIF Advocacy Update

Trump Administration Submits Budget Request to Congress

The federal budget season began on March 11 when the president formally submitted his request for federal funding to Congress. The president’s budget outlines recommendations for funding levels for each federal agency and department in Fiscal Year 2020.The budget asks Congress to reduce overall federal spending by $2.7 trillion, including a 12 percent reduction for the Department of Health & Human Services. Under the proposal, medical research funding at almost every institute that is part of the National Institutes of Heath would be cut.The president’s annual budget – regardless of party affiliation – routinely faces challenges on Capitol Hill, particularly when it comes to medical research funding. The annual budget proposal serves as a starting point for negotiations.


 
 
Osteogenesis Imperfecta Foundation

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804 W. Diamond Ave, Suite 210  |  Gaithersburg, MD 20878
Phone: (301) 947-0083  or  (844)-889-7579  |  Fax: (301) 947-0456

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