OIF Regional Conference: Kansas City, MO

Save the Date! OIF Regional Conference: Kansas City
Saturday, November 5, 2022
The OIF is excited to announce the next Regional Conference will be held in Kansas City, Missouri, on November 5! This 1-day meeting will be co-chaired by Dr. Eric Rush and Dr. Jean-Marc Retrouvey and will be held at the Embassy Suites by Hilton Kansas City Plaza. Speakers will present on topics related to understanding and treating OI and will address pediatric and adult health concerns. More information and registration will be available at www.oif.org/event/regionalkc.

50th Anniversary Celebration

 

OI Research Update: Longitudinal Study

Join the OIF for a discussion about the Longitudinal Study of Osteogenesis Imperfecta on Thursday, September 22 at 7:00 PM ET

The Longitudinal Study of Osteogenesis Imperfecta, also known as the Natural History Study, is the largest research project ever conducted on people with OI.  With nearly 1000 people enrolled, it has tracked the life cycle of symptoms for people with OI since 2009.  Findings from this Brittle Bone Disorders Consortium (BBDC) study will help medical professionals better understand OI’s impact on individuals at different stages of life and will be used as a foundation for developing guidelines for care.

To help explain this study and answer audience questions, the OIF will be joined by Dr. Reid Sutton, Geneticist at Baylor College of Medicine, Administrative Director and Principal Investigator of the BBDC, and member of the OIF Medical Advisory Council and Board of Directors. Dr. Sutton will discuss the design of the study, its goals, and what researchers have learned so far.

 

CLICK HERE TO REGISTER TO ATTEND

 

This session is part of a series meant to demystify and contextualize medical research from the Brittle Bone Disorders Consortium. Previous research updates can be viewed here.

 

Virtual Conference Recordings Now Available!

To watch session recordings from the 2022 OIF Virtual Conference,
click the session titles below, or visit the OIF’s YouTube Channel.  

2022 OIF Virtual Conference Sessions
Research Update
Transition of Care
Navigating a New Diagnosis
Closing Session 

2022 La Conferencia Virtual (Español)
Actualización de la Investigación
Transición de Cuidar 
Sesión de Cierre

2022 Conférence Virtuelle de la Fondation (Française)
Thank you to the Canadian Osteogenesis Imperfecta Society for sponsoring French interpretation!
Mise à Jour sur l’état de la Recherche
Transition des Soins
Naviguer à Travers un Nouveau Diagnostique
Discours de Clôture

Visit the OIF’s YouTube Channel

Meet OIF Board President, Ted Trahan!

Meet OIF Board President, Ted Trahan!
We are thrilled to welcome Ted Trahan as the President of the OIF Board of Directors!
Ted has been a member of the OIF Board of Directors since 2016, most recently serving as Treasurer. His son Greg was the inspiration for the family joining the OI community, which they have been members of since the San Diego national conference in 1998. Professionally, the bulk of Ted’s career has been with healthcare technology company Medtronic. His roles there span development and manufacturing. Ted currently works in project management. Prior to Medtronic he worked in information management consulting for Anderson Consulting. Ted has a BS in Electrical Engineering from the University of Texas. In addition to the OI Foundation, his other community involvement has included his church, the Boy Scouts and Habitat for Humanity. Ted enjoys sailing on waters large and small. Ted and Sharon, his wife, have two grown children, Greg and Käthe

Share Your Voice in the OIF World Cafe!

The OIF Board of Directors and staff invite you to be our guest at a “World Café” conversation to share your ideas and experiences as the Foundation looks toward the future

As a participant, you will have opportunity to share what Unbreakable Spirit® means to you, and what it might look like to share with a growing community. Information shared in these small group conversations will be gathered and used for subsequent planning to inform the priorities and direction of the OI Foundation.

There are two ways to participate! 

In-person on July 29 in Tampa, Florida. The event will take place from 2pm-5pm at the Embassy Suites—Tampa, USF. To attend, please email Jessica Ransome at jransome@oif.org

Virtually on August 4, 2022 from 6:00pm – 8:00pm ET. To attend, please click here to register today.

If you are unable to attend, but would like to share your opinion, please contact jransome@oif.org.

Welcome to the OIF Board of Directors!

The OIF 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.

On July 1, 2022, we will welcome Karen L Braitmayer, Dr. Michelle Fynan, James (Jamie) Sharples, and Dr. V. Reid Sutton to the OIF Board of Directors.

Karen Braitmayer is the founder and managing principal of Studio Pacifica, an architectural consulting firm located in Seattle, Washington. The firm is committed to creating beautifully designed, barrier-free civic, commercial, education, hospitality, medical and multi-family residential projects since 1993. In addition to her role as managing principal, she has recently served on the US Access Board, an independent Federal agency that provides leadership in accessible design public policy. According to her company’s bio, “early in her career, it occurred to Karen that as an architect and a wheelchair user, it was possible for her to make a unique contribution to the field. Her professional focus on accessibility and her advocacy efforts for inclusion certainly did just that.” As a member of the OI community and a person with OI, Karen is a regular and popular speaker at the OIF National Conference and is extremely helpful to community members who are undertaking renovations to make their homes more accessible. She has been a participant at various international OI meetings. In her private life she is an avid knitter, sailor, and traveler, and enjoys spending time with her husband and daughter.

 

Dr. Michelle Fynan is a Licensed Mental Health Counselor with a PhD in Clinical Sexology. She is a Board Certified Clinical Sexologist, Sex Therapist, and Relationship/Intimacy Coach. She has specialized training from Harvard Medical School in Treating Couples, and she holds a Masters of Science in Counseling with a dual specialization in Mental Health Counseling and Marriage, Couples, & Family Therapy. She offers virtual coaching for singles, couples, and groups on the topics of dating, relationships, sex, and intimacy, with a specialization in chronic illness and disability. Michelle has Type 1 OI and grew up as an active member of the OI community, regularly attending conferences and support group meetings with her parents. Now as a mental health professional, she has presented at a number of national and regional conferences for the OI Foundation as well as scientific and town hall meetings. She is currently serving on OIF’s PCORI Patient Advisory Board and was on the PCORI Education Committee for improving patient centered outcomes at the start of the COVID19 pandemic. She was also a Masters Thesis Committee Chair for a Baylor College of Medicine Genetic Counseling Program student who successfully defended their thesis on parental experiences and satisfaction with genetic counseling for a prenatal diagnosis of OI. Michelle lives in FL with her husband and her two daughters (who also have OI), and she looks forward to continuing to support the mission of the OIF together with her family.

 

Jamie Sharples lives in Downingtown, Pennsylvania with his 13-year old daughter. He was born with Type III OI and is the only member of his family with OI. Jamie manages the private equity firm he founded in 2012 which focuses on investments in commercial real estate in the Southeast U.S. He frequently spends time in North Carolina and South Carolina for work.

Jamie previously served on the OIF Board of Directors (2003 – 2009) and has acted as the Chair of the Finance Committee for the past decade. His interest in the Foundation is deep and he said, “I’ve found my work with the Finance Committee very rewarding over the past many years, but I am eager to take a more active role in helping the Foundation develop the best course forward to meet the rapidly evolving challenges it and its constituents face.”

 

Dr. Reid Sutton is Professor of Molecular & Human Genetics at Baylor College of Medicine in Houston, Texas. He is attending physician in the Skeletal Dysplasia Clinic at Texas Children’s Hospital where he provides care to children and adults with OI and other skeletal disorders. He is a member of the OIF medical advisory council and was a Principal Investigator for the OIF Linked Clinical Research Centers, a five-year longitudinal study of OI sponsored by the OIF. He is currently the co-Principal Investigator for the Longitudinal Study of the Brittle Bone Diseases Consortium of the Rare Disease Clinical Research Network (BBDC-RDCRN) and the Clinical Team Liaison for the BBDC-RDCRN. The BBDC is an NIH-sponsored, collaborative initiative with 13 participating sites across North America that aims to advance research and clinical care for individuals with OI.