Historical Launch of BBSOAS Center of Excellence Apr. 21, 2023

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Friday, June 2, 2023 at 9:00pm UTC

BBSOAS Center of Excellence Launched by NR2F1 Foundation

Royal Oak, United States - June 2, 2023 / NR2F1 Foundation /

On April 21, 2023, the BBSOAS Center of Excellence was launched at Cincinnati Children’s Hospital. Making history with this momentous event was Dr. Veeral Shah leading his multi-disciplinary team of doctors, in collaboration with the NR2F1 Foundation.

first patients at BBSOAS Center of Excellence

BBSOAS Clinic Day 

Carlie and Jeff visited the BBSOAS clinic with their 10-year-old daughter Sidelle, and they were in awe at the staff's expertise and their effectiveness as they interacted with Sidelle. Carlie noted, "They were patient, thorough, friendly, and professional. It's difficult to get Sidelle engaged in a testing environment but they were very natural and flexible while implementing strategies to keep her interest. They gave her breaks when she needed them and learned quickly what motivated her. We just sat back and watched in amazement!"

Dr. Shah opthalmology exam

The historic day involved three families and began with a patient assessment in the cerebral visual impairment (CVI) clinic run by Dr. Terry Schwartz as part of Cincinnati Children's Vision Rehabilitation Program. Dr. Schwartz’s team consisted of Melody Klayer, a long-time assistant to Dr. Schwartz, Melissa Rice, a pediatric optometrist, and Elsie Bush, an occupational therapist (OT). The team collaborated to determine each child's CVI level. Dr. Shah then performed an ophthalmology examination, detailing the ocular findings of the eye and recommending prescriptions for eyeglasses.

CVI Reports and Recommendations

After the visit, each family received a CVI report for their child with observation comments and recommendations for mobility/orientation, education, and occupational therapy. They were also given a comprehensive list of cerebral vision impairment resources and information.

evaluating level of CVI

Brenda, whose 7-year-old son Sawyer was one of those assessed, remarked, "It was the most comprehensive evaluation he's had since his diagnosis 5 years ago. It was mind-blowing to learn more about how Sawyer's vision works and how he interprets what he sees."

Parents have become accustomed to having to teach and inform the doctors who provide care for their children with BBSOAS because most doctors and specialists know nothing about the disorder. Families that experience this find it to be frustrating and exhausting. Carlie said, "It was a relief to finally see specialists and learn from them; not the other way around." 

Follow up visits

The plan is for Dr. Shah and his team of experts to follow up with their BBSOAS patients every six months. Not only will the future visits be valuable for the families, but the information gained will benefit future research for BBSOAS and CVI. One by one, every patient is contributing to the natural history study spearheaded by the NR2F1 Foundation to guide research toward potential treatments and therapies that will improve the quality of life for all those living with BBSOAS.

Contact Information:

NR2F1 Foundation

416 E. Kenilworth Ave.
Royal Oak, MI 48067
United States

Carlie Monnier
https://nr2f1.org/

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Original Source: https://nr2f1.org/celebrating-launch-of-bbsoas-center-of-excellence/