ONH Consulting provides direct and personalized guidance, support and advocacy services to families of children and youth with Optic Nerve Hypoplasia (ONH). We educate families and professionals regarding the unique impact of ONH on all facets of a child's life. We help families obtain the services they need to achieve to the best of their ability in today's complex and ever-changing classroom environment. We are currently the only source of direct information and consultation from the special and unique insight of an adult professional living with ONH.

The mission of ONH Consulting is to enable children and youth with ONH to achieve to their fullest potential and participate in their community to the fullest extent possible. Most children and youth with ONH receive medical, educational, and social services from a hodgepodge of organizations, health care providers, and school-based programs. Many of these organizations have limited understanding of the characteristics that make raising, educating, and helping a child with ONH to thrive such a unique and challenging experience. Many professionals also tend to see the child with ONH in terms of their own special interest, such as low vision or “problem” behaviors, without examining the child as a whole with his /her unique strengths, abilities, and challenges. This can have profound, adverse consequences for the child and cause him to fall years behind his peers socially and academically.

Our president and founder, Christopher Sabine, has had a lifetime of experience with several of the unique challenges of ONH, including visual impairment, behavioral difficulties, and sensory integration dysfunction. He has had years of professional experience as a case manager and advocate for youth with chronic health conditions. By choosing ONH Consulting, you will have the special experience of working with a trained professional who knows ONH from the “inside’ and can provide expertise based on his own insights of how a child with ONH actually perceives the world, not “cookie-cutter” answers from the latest textbooks or work with children and youth with other disabilities or health conditions.

ONH Disease Distribution Survey

The Division of Ophthalmology at Children's Hospital Los Angeles is conducting an ongoing research study to determine how births of children with ONH are spread across the United States.  Participation in this study is available to people diagnosed with ONH in the United States.  If you were diagnosed with Septo Optic Dysplasia (SOD), you may also participate. 

The purpose of this study is to gather data concerning the factors associated with the formation of ONH prior to birth and identify unique distributions of cases in specific geographic areas.  This study is being conducted by Mark Borchert, M.D. and Pamela Garcia-filion, M.P.H.  Your participation is completely voluntary and involves filling out a simple form, which you can submit online or by mail.  Your responses will be kept strictly confidential and no personal information will be collected. 

For more information on this ground-breaking study, please call the Division of Ophthalmology at Children's Hospital Los Angeles at (323) 361-6219 between 8 A.M. and 4 P.M. Pacific Time, Monday through Friday.  To participate in this study, click here.