The March issue of E-News is here! Read about the OIF National Conference, research updates, and upcoming OIF Events at https://mailchi.mp/oif/march2024!
Month: March 2024
Members are the Heart of the OI Foundation
Dear Friend,
Greetings! Thank you for being an active supporter of our OI community! OI Foundation members make up the heart of our organization. As one of our dedicated supporters, we hope you will consider joining or renewing your membership for the 2024-2025 membership year. Our continued success is only possible due to your generosity and commitment to our mission – the future of the Osteogenesis Imperfecta Foundation depends on you!
Please consider becoming a member of the OI Foundation to continue the legacy of families and individuals living with OI determined to find answers.
OI Foundation Member Marnie Starkey shares why being a member of the OI Foundation is important to her and her family below.
“We have met so many new friends through OIF events like the National Conference and Regional Support Group meetings. Being a part of the OIF allows us to not only benefit from programs and resources, but also allows us to help others with OI!” Marnie Starkey (member since 2019)
Your OIF membership will help provide medically verified information on OI to medical professionals, parents, caregivers, and individuals living with OI. It will give opportunities for people with OI to connect through the OIF website, social media sites, local support groups, and the OIF National and Regional Conferences. Lastly, it will accelerate the pace of OI research through scientific and clinical meetings and by funding new young investigator grants.
Take a moment to learn more about the four different membership levels below.
There are four different membership levels that include the following:
BRONZE – $36
• Exclusive OIF program update meeting
• Annual subscription to Breakthrough
• Voting privileges at Board Member elections
SILVER – $100
• OI Foundation drawstring bag
• Exclusive OIF program update meeting
• Annual subscription to Breakthrough
• Voting privileges at Board Member elections
GOLD – $365 ($1 per day!)
• OI Foundation drawstring bag
• Exclusive OIF program update meeting
• Annual subscription to Breakthrough
• Voting privileges at Board Member elections
• Complimentary ticket to an OIF fundraising event of your choice or a complimentary registration to an OIF Regional Conference 2024-2025
1970 Society – $1,000
• OI Foundation drawstring bag
• 1970 Society lapel pin
• Exclusive OIF program update meeting
• Annual subscription to Breakthrough
• Voting privileges at Board Member elections
• Complimentary ticket to an OIF fundraising event of your choice or a complimentary registration to an OIF Regional Conference 2024-2025 (does not include National Conference)
The OI Foundation owes its success to its loyal, supportive members; the organization’s future depends on you! I hope that you will consider joining the OIF or renewing your membership. Your membership enables us to continue offering the exemplary services we provide to all individuals affected by OI. Together, we truly do have an Unbreakable Spirit®.
Sincerely,
Tracy Hart
Chief Executive Officer
Please consider becoming a member of the OI Foundation by visiting www.oif.org/membership.
Somewhere To Go
In October 2023, the OI Foundation hosted a conference titled, Somewhere to Go for Adults with Childhood-Onset Rare Diseases: A Conversation About How We Can Fill Gaps in Care, to bring together various stakeholders to explore the transition of care and gaps in adult care within the childhood-onset rare disease communities. Through collaboration among the patients, caregivers, clinicians, and health researchers in a wide variety of fields, we aimed to identify common themes that transcend the specifics of individual rare diseases, recognizing it is not feasible or practical to have separate strategies for each disease. These foundational elements are essential to the longer-term tasks of devising solutions, establishing the metrics necessary to evaluate their actual performance, and understanding the conditions and incentives that facilitate the adoption of adult care models that perform well for adult patients with childhood-onset rare diseases.
Click here to view the summary document of that two-day working meeting which presents the findings, work products, and recommendations that resulted.
Webinar: Accessible Travel 101
With the OIF National Conference 2024 happening this summer, the OI Foundation invited OI community members to attend a webinar on accessible travel. Speakers Aaron Busch and Joshua Werner shared information about research, planning, and commencing a trip for the wheelchair-dependent traveler.
Speakers
Aaron Busch
Aaron is a seasoned Accessible Travel Specialist with over four years of industry expertise, coupled with a rich twenty-year journey through the lens of a firsthand disability perspective.
Joshua Werner
Joshua, whose adventurous spirit and life with Osteogenesis Imperfecta has taken him across continents – from the castles of Scotland to the landscapes of South Africa. Traveling with a service dog and a power wheelchair, Joshua’s journey through countries like England, Germany, Ireland, and Canada, as well as extensive travels within the United States, have equipped him with a wealth of practical insights.
Proclaim National OI Awareness Week 2024 in your State!
We need YOUR help to proclaim National OI Awareness Week (May 4 – 11, 2024) in every state!
To request a proclamation in your state, follow the steps below.
- Click on your state below.
- Suggested Proclamation Request Language and Suggested Proclamation language are available here. If required, you may copy/paste this into your proclamation request form.
- When you receive your proclamation, please send an electronic version to gbeug@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
Georgia
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
West Virginia
Wisconsin
Wyoming
If you have any questions, please contact Gabriela at gbeug@oif.org.
