Article
How to find a doctor who is able to evaluate for and diagnose CVI
Use our CVI Doctor Directory to find a medical professional in your area who may be able to evaluate for and diagnose CVI.
CVI is the leading cause of childhood blindness and low vision — but alarmingly underdiagnosed and misunderstood. According to research from the CVI Center using medical claims data and advanced analytics from McKinsey & Company, less than 20% of kids with CVI are diagnosed with CVI in the U.S.
As parents and caregivers, we live it. We know that it can be difficult to find a medical provider who is able to evaluate for and diagnose CVI. Access to CVI expertise in the medical community is limited. We are tasked with the huge undertaking of learning how to use CVI data to advocate for our children in the doctor’s office and beyond. This is why it’s hard to get a timely diagnosis and why so many people with CVI are missed. Without a diagnosis, people with CVI are not able to get the supportive care, interventions, services, and accommodations to fully access their world and define their own success.
As we work with the medical community to raise awareness of CVI, encourage the development of standardized and clinically validated diagnostic tools, and help improve diagnostic rates, we also know that our kids with CVI can’t wait.
We developed a list of doctors that could help families get started in their CVI diagnosis journey. It is solely an informative tool and a starting place for families (and not an official endorsement). This directory is a work in progress. We know there are more medical professionals in each state who know about CVI. Listed below are those who responded to our inquiries about being included in this list.
If you’d like to suggest a medical provider who is knowledgeable about CVI and able to evaluate and diagnose, please email [email protected]. Include the first and last name, specialty, and location in your email.
How was the CVI Doctor Directory developed?
This list is mainly informed in two ways: 1) neuro-ophthalmologists responded to a survey that asked if they wanted to participate in our CVI directory and 2) by parent-reported information. The CVI Now team followed up with medical providers who were parent-reported, asking permission to be a part of this list.
Tips for medical advocacy
We spoke with one of the medical leaders in the CVI field, Barry Kran, OD, FAOO, about how families should seek medical care once they suspect vision problems. Read the full article!
Do your research
Even when contacting a doctor on this list, we suggest that parents ask specific questions before booking an appointment to make sure it’s the right fit, such as:
- How often does your practice evaluate children or young adults with CVI?
- Is your office comfortable caring for children and people with disabilities?
- What kind of additional testing can we expect?
- How can we make sure that my child will have a smooth experience in your office?
- Do you generally run behind? If so, how should we set up the appointment to keep waiting at a minimum?
- What medical and historical information do you need me to bring to support your evaluation?
Come prepared
When it’s time for your appointment, arm yourself with your child’s medical history in addition to your anecdotal observations, and ask if you can send information in advance for review. Dr. Kran recommends:
- Educational reports, such as EI assessments, current IESPs, or IEPs, including PT, OT, communication, speech, and other evaluations. A functional vision evaluation and CVI assessment, if applicable.
- All pertinent medical reports, such as reports from any form of brain scan, genetics, and neurology reports.
- Observational data: You know your child best! This can include informal data and videos. Learn how CVI affects skill development and the power of trusting your observation. Also, check out the in-depth CVI behaviors resource, where you can find observational questions for each CVI behavior.
Perkins CVI Doctor Directory
This list is solely an informative tool and a starting place for families and caregivers, and not an official endorsement. The directory is a work in progress. To suggest a medical provider knowledgeable about CVI and able to evaluate and diagnose, please email [email protected].
Alaska
- Dr. Robert Arnold, Ophthalmologist, Alaska Children’s Eye & Strabismus, Anchorage, AK
Arizona
- Dr. Brendan Cassidy. Pediatric Ophthalmologist ABC Children’s Eye Specialists, Phoenix and Mesa, AZ
Arkansas
- Dr. Paul Phillips, Ophthalmologist, Arkansas Children’s Hospital, Little Rock, AR
California
- Dr. Alejandra de Alba Camommanes, Pediatric Ophthalmologist, UCSF Benioff Children’s Hospital, San Fransisco
- Dr. Beth Ballinger, Optometrist, Newport Beach Developmental Optometry Group
- Dr. Mark Borchert, Ophthalmologist, Children’s Hospital Los Angeles
- Dr. Arvind Chandna, Pediatric Ophthalmologist, Smith Kettlewell Eye Research Institute, San Francisco
- Dr. Melinda Chang, Neuro-Ophthalmologist, Children’s Hospital Los Angeles
- Dr. Donna Ornitz, Pediatric Ophthalmologist, Peninsula Eye Physicians, San Mateo
- Dr. Clair Schmidt, Pediatric Ophthalmologist, Valley Children’s Health Care, Madera
- Dr. Jeremy Shumaker, Optometrist, Rising Star Optometry, San Francisco
- Dr. Mark Silverberg, Neuro-Ophthalmologist, Sansum Clinic Ophthalmology, Santa Barbara
- Dr. Timothy Winter, Neuro-Ophthalmologist, Loma Linda University, San Bernardino
Colorado
- Dr. Scott Demarest, Pediatric Neurologist, Children’s Hospital Colorado, Aurora, CO
- Dr. Robert Enzenauer, Ophthalmologist, Children’s Hospital Colorado, Aurora, CO
- Dr. Rebecca Edwards-Mayhew, Ophthalmologist, Children’s Hospital Colorado, Aurora, CO
- Dr. Emily McCourt, Ophthalmologist, Children’s Hospital Colorado, Aurora, CO
- Dr. Lauren Mehner, Ophthalmologist, Children’s Hospital Colorado, Aurora, CO
- Dr. Michael Puente, Ophthalmologist, Children’s Hospital Colorado, Aurora, CO
- Dr. Anna Steele, Pediatric Ophthalmologist, Children’s Eye Physicians Colorado, Wheat Ridge, CO
Florida
- Dr. Craig McKeown, Ophthalmologist, Bascom Palmer Eye Institute, Naples, FL
- Dr. Carlos Mendoza, Ophthalmologist, Bascom Palmer Eye Institute, Naples, FL
- Dr. Natalia Villate, Ophthalmologist, Fort Lauderdale Eye Institute, Plantation, FL
Georgia
- Dr. Stephanie Goei, Pediatric Ophthalmologist, AU Medical Center, Augusta, GA
- Dr. Amy Hutchinson, Ophthalmologist, Emory Eye Center, Atlanta, GA
- Dr. Jason Peragallo, Neuro-Ophthalmologist, Emory Eye Center, Atlanta, GA
Illinois
- Dr. Carla D. Adams, Optometrist, The Mind-Eye Institute, Northbrook, IL
- Dr. Patricia Davis, Pediatric Ophthalmologist, Progressive Eye Care, Lisle, IL
- Dr. Linda S. Weil, Optometrist, The Mind-Eye Institute, Northbrook, IL
- Dr. Deborah G. Zelinsky, Optometrist, The Mind-Eye Institute. Northbrook, IL
Iowa
- Dr. Alina V. Dumitrescu, Ophthalmologist, University of Iowa Hospitals and Clinic, Iowa City, IA
Kansas
- Dr. Linda Lawrence, Ophthalmologist, private practice, Salina, KS
Kentucky
- Dr. Nicholas Silvestros, Pediatric Ophthalmologist, University of Louisville
Maryland
- Dr. Michael Repka, Pediatric Ophthalmologist Wilmer Eye Institute John Hopkins Hospital, Baltimore, MD
Massachusetts
- Dr. Anna Maria Baglieri, Optometrist, Boston Children’s Hospital
- Dr. Anne Fulton, Ophthalmologist, Boston Children’s Hospital
- Dr. Gena Heidary, Neuro-Ophthalmologist, Boston Children’s Hospital
- Dr. Melanie Kazlas, Ophthalmologist, Boston Children’s Hospital
- Dr. Barry Kran, Optometrist, NECO Center for Eye Care at Perkins
- Dr. Jem Martin, Optometrist, NECO Center for Eye Care at Perkins
- Dr. Nicole Ross, Optometrist, NECO Center for Eye Care at Perkins
- Dr. Mary Whitman, Ophthalmologist, Boston Children’s Hospital
Michigan
- Dr. Christopher Glisson, Neuro-Ophthalmologist, Trinity Medical Center, Grand Rapids, MI
Missouri
- Dr. Margaret Reynolds, Pediatric Ophthalmologist, St. Louis Children’s Hospital
Nebraska
- Dr. Richard (Skip) Legge, Neuro-Ophthalmologist, Truhlsen Eye Institute, Omaha, NE
Nevada
- Dr. Mitchell Strominger, Ophthalmologist, Renown Regional Medical Center, Reno, NV
New Jersey
- Dr. Abba Cargan, Neurologist, Private Practice, Mountainside, NJ
- Dr. Amy Wexler, Ophthalmologist, South Jersey Eye Associates, Moorestown, NJ
New York
- Dr. Euin Cheong, Optometrist, Helen Keller Services Brooklyn, NY
- Dr. Benjamin Hammond, Ophthalmologist, University of Rochester Medical Center
- Dr. Erica Oltra, Pediatric Ophthalmologist, Pediatric Ophthalmic Consultants, NYC
- Dr. Shirah Schwartz-Jacobs, Ophthalmologist, Rockland iCare, Suffern, NY
North Carolina
- Dr. Mays Dairi, Neuro-Ophthalmologist, Duke Eye Center, Durham, NC
- Dr. Laura Enyedi, Ophthalmologist, Duke Eye Center, Durham, NC
- Dr. Sara Grace, Pediatric Ophthalmologist, North Carolina Eye, Ear, Nose & Throat, Durham and Cary, NC
- Dr. Namita Kashyap, Orthoptist, Duke Eye Center, Durham, NC
Ohio
- Dr. Katherine Hogan, Optometrist, Cincinnati Children’s
- Dr. Melissa Rice, Optometrist, Cincinnati Children’s
- Dr. Terry Schwartz, Ophthalmologist, Cincinnati Children’s
- Dr. Veeral Shah, Pediatric Neuro Ophthalmologist, Cincinnati Children’s
Oregon
- Dr. Tina Rutar, Ophthalmologist, Cataract and Laser Institute of Southern Oregon (Medford, OR)
Pennsylvania
- Dr. Grant T. Liu, Children’s Hospital of Philadelphia
- Dr. Pretti Patil, Neuro-Ophthalmologist, University of Pittsburgh Medical Center
- Dr. Sharon Lehman, Ophthalmologist, Willis Eye Hospital, Philadelphia, PA
Puerto Rico
- Dr. Mariam Vila-Delgado, Ophthalmologist, Centro Oftalmológico Metropolitano, San Juan, PR
South Carolina
- Dr. Janette White, Ophthalmologist, Prisma Health Pediatric Ophthalmology, Greenville, SC
Tennessee
- Dr. Caitlyn Reynolds, Optometrist, Vanderbilt Eye Institute, Nashville, TN
Texas
- Dr. Rachel Cooley, Ophthalmologist, Children’s Eye Center of South Texas, San Antonio, TX
- Dr. Emely Karam, Ophthalmologist, UT Health San Antonio
- Dr. Jane Edmond, Ophthalmologist, Dell Children’s Hospital, Austin, TX
Washington D.C.
- Dr. Stephen F. Stasheff, Pediatric Neurologist, Children’s National Hospital
Washington State
- Dr. Kenneth Epley, Ophthalmologist, Children’s Eye Care, Kirkland, WA
- Dr. Neena Gabrielle, Optometrist, Gabrielle Family Vision Care, Kirkland, WA
- Dr. Laura Huang, Ophthalmologist, Seattle Children’s Hospital
The United Kingdom
- Dr. Arvind Chandna, Paediatric Ophthalmology, Alder Hey Children’s Hospital, Liverpool, United Kingdom
- Dr. Mey Mohan, Ophthalmology, The Lancaster Hospital, United Kingdom
Learn more about what to do after a CVI diagnosis.
Parents and caregivers, if you need a provider closer to you, join our CVI Now Parent Facebook group to ask your questions to our supportive community.
