Category: Updates from the OIF

You’re invited to the first-ever Baubles & Bubbles for Better Bones event!

Posted on by Delores Selivon

Please join former OI Foundation Board of Directors member, Robin Wright, for a special behind-the-scenes tour of the Sotheby’s Magnificent Jewels auction. OI community members, friends and family will have a special all-access pass for this one-of-a-kind virtual event on Tuesday, April 13th from 6-7pm ET.

During the virtual event, enhance your viewing with a bottle of Sotheby’s Champagne, Blanc de Blancs, Grand Cru* and Godiva Assorted Chocolates gift box. Champagne and chocolate will be shipped to your home prior to the event, the cost of which is included in the package.
*Or a comparable bottle

To register for this event, or to order your champagne and chocolate package, please visit www.oif.org/finewinesnewyork.

LAST CALL! COVID-19 Survey Closes Wednesday

Posted on by Delores Selivon

As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues to impact the OI community.

More than 500 OI community members have completed this survey. If you have not taken the survey yet, we need to hear from YOU! Please take a few minutes to complete the survey today to help the OIF better understand and serve the OI community in 2021. Survey results will be shared on the OIF website and Breakthrough newsletter this spring.

This survey will close on Wednesday, March 24, 2021.

We need YOUR help to proclaim National OI Awareness Week in every state!

Posted on by Delores Selivon

Wow! Last year,  23 states officially proclaimed National OI Awareness Week! Thank you to everyone who helped raise awareness of OI in their local and state communities. Help us proclaim May 1-8, 2021 as National OI Awareness Week across the country!

It only takes 5 minutes to submit a proclamation for your state! Once you submit a proclamation request, contact Christina Teufert at cteufert@oif.org or 301-947-0083. If you receive your proclamation in the mail, please send a scanned copy to cteufert@oif.org

To request a proclamation in your state, follow the steps below.

  1. Click on your state below.
  2. If needed, please use the suggested Proclamation Request Language and Suggested Proclamation language. If required, you may copy/paste this into your proclamation request form.
  3. Once you have submitted the request, notify Christina at cteufert@oif.org. Please include your name and the state you submitted a proclamation request for.
  4. When you receive your proclamation, please send an electronic version to cteufert@oif.org. If you did not receive an electronic version, please send a photo of the mailed proclamation.

Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida

Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Maine
Maryland

Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey

New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina

South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
Washington, DC
Wyoming

Thank you for your help!

Patient Advocate Spotlight: Tracy Hart

Posted on by Delores Selivon

Rare Diseases Clinical Research Network
Patient Advocate Spotlight 

Tracy Hart, chief executive officer of the Osteogenesis Imperfecta Foundation, serves as chair of the Rare Diseases Clinical Research Network (RDCRN)’s Coalition of Patient Advocacy Groups. Here, she talks about her work as a rare disease advocate, the founding of the Brittle Bone Disorders Consortium (BBD), and their work in rare disease patient advocacy and research.

Click here to read the article!

Sunday is #RAREDISEASEDAY

Posted on by Delores Selivon

THIS SUNDAY – #RAREDISEASEDAY

Rare Disease Day, which takes place on the last day of February each year, improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. The OI Foundation is proud to celebrate Rare Disease Day and hope you will join us in raising awareness on this important day! Click here to learn more about Rare Disease Day.

Did you know that there are more than 25 million Americans who are impacted by rare diseases, like osteogenesis imperfecta? On #RareDiseaseDay, we come together to show our stripes and raise awareness! Join us!

  1. ADD A PROFILE PICTURE FRAME!
    More than 400 OI community members have added the OIF’s #RareDiseaseDay frame onto their Facebook profile pictures. Share your Unbreakable Spirit® by adding the frame to your profile picture today!
  2. LIKE, COMMENT, & SHARE!
    Use social media to raise awareness for Rare Disease Day and to share YOUR story.
    Be sure to like, comment, and share the OIF’s Rare Disease Day posts on Facebook, Twitter, and Instagram to help us raise awareness for the rare disease community across the world!
  3. ATTEND #RareDiseaseDay at NIH!
    On Monday, March 1, OIF CEO Tracy Hart and OIF Medical Advisory Council member Robert A. Sandhaus, M.D., Ph.D. will participate as panelists for the session ‘How Care and Research Have Changed During COVID-19‘ at the National Institutes of Health’s (NIH) #RareDiseaseDay event. Click here to register to attend.

Thank you for celebrating Rare Disease Day with the OI Foundation

Impact Grants 101

Posted on by Delores Selivon

Impact Grant Applications are due on MONDAY (3/1/21)!

Impact grants may help cover the cost of items such as a wheelchair, physical therapy, hearing aids, or technology. Apply for an impact grant today at www.impact-grants.com.

IMPACT GRANTS 101:

OIF Health Educator Jessica guides applicants through the Jeanie Coleman Impact Grant application process step by step in the Impact Grants 101 video. Check out the video at https://youtu.be/ebpy9cFsqWA

Virtual Northeast Regional Conference

Posted on by Delores Selivon

Virtual Northeast Regional Conference

The OI Foundation is hosting the first Virtual Northeast Regional Conference on Saturday, February 27 from 9:00am to 12:00pm Eastern Time.

This virtual meeting, chaired by OIF Medical Advisory Council Member Dr. Cathleen Raggio (Co-Director of the Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias at Hospital for Special Surgery and Pediatric Orthopedic Surgeon at the Hospital for Special Surgery in New York City), will feature a series of presentations by experts from the Hospital for Special Surgery (HSS) and other clinics in the Northeast United States. Like past OIF Regional Conferences, this event will provide a brief overview of multiple topics and will feature speakers with extensive experience in treating OI.

Presentation topics will include orthopedic treatments, cardiopulmonary health, hearing, nutrition, physical therapy, and mental health.  After each presentation, the speaker and a panel of Northeast-based medical providers will answer audience questions. The full agenda can be found here.

 


Who should attend? 

The OIF Virtual Regional Conferences are for both OI community members and medical professionals who want to learn more about understanding OI from infancy through adulthood. The event will feature speakers and panelists from New York and New England.

OIF Regional Conferences are great opportunities for those who have never attended an OIF event to learn more about osteogenesis imperfecta and connect with local providers.