Meet OIF Board President, Christine Rossi!

We are thrilled to welcome Christine Rossi as the President of the OIF Board of Directors!

Christine (Wyman) Rossi is a Senior Vice President at reacHIRE, an organization that puts people back to work into Fortune 500 companies after taking career breaks. She has had a 20+ professional career focused around recruiting and development of people at all ages and stages within various businesses & corporate industries. Christine has type I OI as does her father, sister, niece and son and has been volunteering within the OIF for 21 years including 2 stints on the Board of Directors (2003-2009) and (2019-present). She is the current OIF Board of Directors President. Christine started the Unbreakable Spirit® Walk OI in 2005 and took it national in 2007. After 12 years and over $1,000,000 raised, she retired the Boston fundraising event and launched the Strong Bones Gala Boston in 2018 now in its 7th year focused on research around adult health cardiac issues of people with OI. Christine comes from a legacy of committed volunteers specifically her father Dick Wyman who has been heavily involved with OIF since the early 80s. Christine lives in Ashland, MA married to John and has two boys Jack & Hugo.

The OIF is pleased to announce the appointment of four new board members!

The Osteogenesis Imperfecta Foundation (OIF) is pleased to announce the appointment of four new board members, Dr. Kara Ayers, Julie Hocker, Tony Jacobsen, and Cindy Medina.

“We are thrilled to welcome these accomplished individuals to our Board,” said Tracy Hart, CEO of the OI Foundation. “The new members bring a wealth of expertise and diverse perspectives that will undoubtedly contribute to the mission of the OI Foundation.”

The Board Development Committee searches for nominees with a personal connection to osteogenesis imperfecta and experience in one or more of the following areas: accounting, finance, fundraising, organizational management, public relations, strategic planning, business or law. Board members commit to two onsite board meetings per year (8-12 hours each), one teleconference board meeting per year (3 hours) and 8-10 hours per month of committee or task force assignments. Members of the OI Foundation Board of Directors serve three-year terms.

Learn more about the new Board Members below!

Dr. Kara Ayers is an Associate Professor and the Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities at Cincinnati Children’s Hospital Medical Center. She is trained as a psychologist and leads the National Center for Disability, Equity, and Intersectionality. Dr. Ayers’ research interests include health equity, disability ethics, and parenting with a disability. She enjoys applying what she learns through research by educating policymakers about ways we can improve outcomes through better policies for all.

Julie Hocker is a Director of Public Health at Guidehouse. Ms. Hocker leads advisory work for federal, state, industry, and nonprofit executives and experts who are transforming the lives of Americans with disabilities, complex medical conditions, and rare diseases. Most recently, she has been instrumental in reimagining how regulators, researchers, pharmaceutical companies, and patient groups can transform their partnerships and interactions to accelerate the development and approval of life-saving treatments for ultra-rare conditions and underserved populations. Prior to joining Guidehouse, Ms. Hocker served as the U.S. Commissioner on Disabilities. As Commissioner, Ms. Hocker directed the nation’s leading agency, the Administration on Disabilities at the Department of Health and Human Services, charged with executing a $375 million budget and ensuring the nation’s 60 million Americans with disabilities have access to the services and supports they need to live in their communities and fully pursue the freedoms and rights we all enjoy.  Ms. Hocker earned her Master of Business Administration from the University of North Carolina at Chapel Hill and resides in Arlington, Virginia.

Tony Jacobsen (O.I. Type 1) is the author of “Disable Your Disability: Live the Healthy Life You Deserve!” and a certified personal trainer specializing in empowering individuals with disabilities. Tony is committed to helping people lead healthier, more fulfilling lives regardless of their limitations. When he’s not busy coaching clients, you can catch him energizing audiences as a motivational speaker, spreading his message of resilience and possibility. In addition to his professional pursuits, Tony actively supports the O.I. community by hosting monthly online group meetings and dreaming up creative ventures to bolster support and foster connections. Tony is all about spreading positivity, pushing boundaries, and having fun while doing it. He’s ready and excited to amplify the OIF’s already tremendous support for empowering, educating, and advocating for those touched by Osteogenesis Imperfecta.

Cindy Medina I am a mother and healthcare executive in Houston, TX. In both my personal and professional life, I have a passion for improving access to quality healthcare and improving overall quality of life! Currently, I hold the role of Chief Operating Officer for Fairmont Healthcare. Throughout my career I have honed my skills in strategic planning, budget management and community engagement. But what sets me apart is my passion for using those skills to make a positive impact in the world. I have co-chaired fundraising events, led a Girl Scout troop and even developed a scholarship program for a youth volleyball team. I also take immense pride in coordinating the best care possible for my son with special needs. All of these experiences have taught me that with passion, dedication, and commitment, parents can accomplish extraordinary things in both our personal and professional lives. Because of this and the meaningful impact the OI Foundation has made on my family, I am deeply committed to advancing the mission of the OI Foundation!

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.

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.

  1. Click on your state below.
  2. Suggested Proclamation Request Language and Suggested Proclamation language are available here. If required, you may copy/paste this into your proclamation request form.
  3. 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.

 

Edward D. Cranston College Scholarship Program

Applications are now available for the Edward D. Cranston College Scholarship 2024!

This scholarship, created in honor of OI Community Member Edward D. Cranston, is for students with osteogenesis imperfecta who are applying to or have been admitted to a college or university. Edward was born in 1962 with severe OI and challenged himself by pursuing all educational opportunities available to him to achieve his goal of working as a health care professional. He has dedicated his career to working with children with complex respiratory conditions and is currently held in high regard both by professionals in the field, as well as the families of the many children with whom he has worked.

Applicants must articulate a need for scholarship assistance to meet their academic goals, be committed to full-time college enrollment and show proof of enrollment in college to receive the funds. Preference for the scholarship is based on a combination of merit and financial need. Applicants are required to submit at least two letters of recommendation, their most recent official transcript, and a personal essay along with the application form.

Click here for the application.

All applications must be submitted by April 17, 2024. If you have any questions please contact Stacie at sconnors@oif.org.

A Message from Tracy Mulroy

The Osteogenesis Imperfecta Foundation is pleased to introduce the Adult Health Toolkit: Information for Adults Living with OI, Their Families, and Medical Professionals to help you navigate the many aspects of managing your health as an adult living with OI.
Watch a video message from Tracy Mulroy (former OIF Board Member, Chair of the Jamie Kendall Fund for Adult Health, and OIF Adult Health Initiative Community Chair), who has played an instrumental role in the creation of this toolkit. In this video, she explains the importance of this resource, as it provides adults with OI and their caregivers with the knowledge to help educate your healthcare providers and to effectively advocate for your health care needs.
Learn more and view the toolkit at www.oif.org/adulthealth.