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.

 

Meet the New OIF Medical Advisory Council Members!

Since the 1970’s, the OI Foundation’s Medical Advisory Council (MAC) has been comprised of outstanding men and women who have experience in research and the many clinical care specialties related to OI. Over the years, MAC members have made discoveries that advanced our understanding of OI and improved clinical care. MAC members volunteer their time and expertise to review OI Foundation publications, and to advise the OI Foundation’s CEO, staff, and Board of Directors on the implications of new research discoveries and new medicines or treatments related to OI. They answer questions from the OI community and from the medical community.

On July 1, 2022, we will welcome four new members to the OI Foundation MAC: Michael B. Bober, MD, PhD; Jeanne M. Franzone, MD; Eric T Rush, MD; and Maegen Wallace, MD.


Michael B. Bober, MD, PhD
is a pediatrician and geneticist who directs the Skeletal Dysplasia Program at the Alfred I. duPont Hospital for Children in Wilmington, DE.  He is a Professor of Pediatrics at Thomas Jefferson University’s Stanley Kimmel Medical College. Dr. Bober completed a combined M.D./Ph.D. program in Biomedical Engineering at Tulane University. His dissertation research focused on the genetic response of bone to mechanical and hormonal stimulation. He then went on to complete a Pediatrics Residency at Tulane University and a Medical Genetics Residency and Fellowship at Johns Hopkins University. He is a board certified in Pediatrics, Clinical Genetics and Molecular Genetics. Clinically, his practice is exclusively focused on the diagnosis and management of children with skeletal dysplasia. Click here to view Dr. Bober’s publications.

 

Jeanne M. Franzone, MD is a pediatric orthopaedic surgeon at the Nemours Alfred. I. duPont Hospital for Children in Wilmington, DE. She is the Co-Director of the Multidisciplinary Osteogenesis Imperfecta Program. At Nemours, the multidisciplinary OI team provides comprehensive OI care from the prenatal period through the age of 35 years. Dr. Franzone completed orthopaedic surgery residency at Columbia University Medical Center. She then completed a pediatric orthopaedic surgery fellowship at the Nemours Alfred I. duPont Hospital for children and an additional fellowship in limb deformity, lengthening and reconstruction at the International Center for Limb Lengthening in Baltimore, MD. Dr. Franzone is a member of the Limb Lengthening and Reconstruction Society and serves on the Faculty for the OIF OI TeleECHO series. Dr. Franzone is the incoming Co-Chair of the International Conference on Children’s Bone Health (ICCBH) Young Investigator Networking group. Dr. Franzone is on the Scientific Advisory Board for the OIF’s Preparing Adults with Osteogenesis Imperfecta to Engage in Research on Access and Quality of Care for Their Rare Disease PCORI project. Click here to view Dr. Franzone’s list of publications.

 

Eric T Rush, MD is a Clinical Geneticist at Children’s Mercy Hospital and the University of Kansas Medical Center (KUMC). He is an Associate Professor of Pediatrics at the University of Missouri-Kansas City. He is Board Certified in Pediatrics, Internal Medicine and Clinical Genetics. He was previously the medical director of the osteogenesis imperfecta and metabolic bone clinics at Children’s Hospital and Medical Center in Omaha, Nebraska and currently is the co-director of the Children’s Mercy Skeletal Dysplasia clinic. Dr. Rush received Bachelor of Science degrees in Biochemistry and Biology with Concentration in Genetics at the University of Kansas in 2001. He received his medical degree at University of Kansas School of Medicine, Kansas City, KS in 2005. He completed a residency in Internal Medicine and Pediatrics at the University of Nebraska Medical Center in 2009 and Chief Residency in Pediatrics at the University of Nebraska Medical Center in 2010. He finished his training with a Clinical Genetics fellowship at the University of Nebraska Medical Center in 2012. Among his clinical interests are osteogenesis Imperfecta, hypophosphatasia, X-linked hypophosphatemia (XLH), cancer genetics, cardiovascular genetics, dysmorphology, Personalized Medicine, and Genetics of Common Disease. His research interests include extraskeletal manifestations of osteogenesis Imperfecta, best practices in treatment of hypophosphatasia, skeletal pathology in peroxisomal biogenesis disorders, and molecular characterization of rare syndromes. Dr. Rush’s professional affiliations include American College of Medical Genetics, American Academy of Pediatrics, the American Society for Bone and Mineral Research, the International Society for Clinical Densitometry, and Alpha Omega Alpha. He is on the Scientific Advisory Board for the Rare Bone Diseases Alliance and the Global Foundation for Peroxisomal Disease and is on the Board of Directors for RareKC. Click here to view Dr. Rush’s list of publications.

 

Maegen Wallace, MD is an Associate Professor of Orthopaedic Surgery at the University of Nebraska Medical Center and practices pediatric orthopaedic surgery at Children’s Hospital and Medical Center in Omaha, Nebraska. A native of Nebraska, she graduated from Missouri State University with a BS in Sports Medicine and Athletic Training and the University of Nebraska Medical Center with her medical degree. She completed her orthopaedic surgery residency at Saint Louis University and her pediatric orthopaedic surgery fellowship at AI duPont Hospital for Children in Wilmington, Delaware. She is the director of the Osteogenesis Imperfecta clinic at Children’s hospital in Omaha and serves as a board member for the Jansen’s Foundation. She has committed a significant portion of her clinical practice to OI and the majority of her academic practice to OI. Click here to view Dr. Wallace’s publications.

 

OIF Resources to Share with Your Doctor

The OI Foundation has resources for medical professionals.

Does your doctor or treatment team want to learn more about osteogenesis imperfecta? The OI Foundation has a variety of free resources intended to help improve medical professional understanding and treatment of people with OI. We encourage you to forward this email to let them know!

All of the OIF’s resources are created in close collaboration with our Medical Advisory Council members and other leading experts.

Medical Professional Emails 
Sign up to receive OIF medical professional emails to learn about upcoming events, programs, and resources to better understand and treat patients with osteogenesis imperfecta.

Professional Consultations
Finding knowledgeable colleagues to consult on patients with osteogenesis imperfecta can be challenging. The OIF is happy to connect any medical professional with members of our Medical Advisory Council (MAC) or other clinicians with expertise in treating patients with OI.

Medical Professional Database
The OIF maintains a list of medical professionals who have experience treating patients with osteogenesis imperfecta. Please contact the OIF’s Health Educator, Jessica Ransome, at jransome@oif.org if you would like to be added to this database or if you want to request information on other local clinicians

Medical Professional Calendar
The OIF maintains a calendar for medical professionals to keep track of upcoming medical professional events and meetings. To see this regularly updated list of public meetings, go to www.oif.org/medprocalendar/.

OIF Information Center
The OIF has a library of resources to help explain various topics about understanding, treating, and living with OI. The OIF Information Center includes factsheets and publications on genetics, respiratory issues, dental care, pregnancy, and much more.

TeleECHO Sessions and Recordings
The OI Foundation holds monthly TeleECHO Clinic sessions on rare bone disease and OI topics for medical professionals. In each session, an expert speaker delivers the main presentation on a rare bone disease topic, followed by discussion and participant-led case presentations. Medical professionals of all levels are welcome to attend and present cases, and we especially encourage early-stage clinicians to present cases. Free CME is available for all attendees. A full schedule of upcoming Rare Bone Disease TeleECHO sessions can be found here, and recordings of all past presentations can be found on the OIF’s YouTube channel. The OI ECHO is hoping to announce an update on its next year soon.

Educational Videos and Recorded Professional Meetings
The OIF has multiple videos of past professional meetings available on the OIF Youtube channel. This includes Rare Bone Disease and OI TeleECHO presentations, Rare Bone Disease Alliance Scientific Symposiums, and OI Research Updates. Also, we have a wide variety of patient-facing recordings, including sessions of past OIF National Conferences in English, Spanish, and French.

Wishbone Day 2022

The OI Foundation will be posting #WishboneDay posts every hour on the hour from 7:00am – 7:00pm ET. Be sure to LIKE, SHARE, AND RETWEET to help us spread OI awareness across social media! Make sure to wear yellow and follow the OI Foundation on Facebook, Twitter, and Instagram so you can help us raise OI awareness worldwide by liking and sharing every #SHAREforAWARENESS and #WishboneDay post!

We would love to see your photos! Please email your Awareness Week and Wishbone Day photos to the OI Foundation at bonelink@oif.org

Double Good Popcorn Store is back!

Double Good Popcorn Awareness Week Fundraiser
Whether you are into salty or sweet, this awareness week fundraiser has something for everyone! Double Good popcorn is not only delicious but 50% of the sales go towards supporting the mission of the OI Foundation when you purchase from the OIF’s virtual popcorn store or create a store of your own!

CLICK HERE TO SHOP NOW!

To create your own Double Good Popcorn Shop for the OI Foundation:
1. Download the Double Good app
2. Enter our Event Code VTNGKM in the app
3. Create your Pop-Up Store

The OIF Popcorn store will be open May 3-7 during National OI Awareness Week!