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Dr. Adriana Verwey Publishes Updated Inclusive Recreation Brochure

Friday, March 8, 2024

photo of Dr. VerweyThis week at the 24th annual Anne E. Dyson memorial grand rounds and community health symposium Dr. Adriana Verwey, Assistant Professor Department of Pediatrics, Developmental & Behavioral Pediatrics was the special guest speaker in a discussion about promoting physical opportunities for all children. Dr. Verwey presented her updated inclusive recreation brochure 'A Guide to Recreation and Leisure for All in Greater Rochester'.

"Accessible recreation is a civil right and outlined in ADA accessible design standards" said Dr. Verwey

She empathized that providers who have knowledge of resources are a main facilitator of promoting inclusive recreation for children with disabilities. She discussed the health disparities that exist for individuals with disabilities and how the benefit of physical activity can improve these health disparities. Her research shows that the barriers to exercise for people with disabilities are not only program cost or transportation as would be expected, but nearly 50% of individuals reported they did not know how to exercise and, they did not know where to exercise or what facilities were available to them.

By creating this inclusive recreation brochure Dr. Verwey aims to share her knowledge of resources to accessible recreation throughout the Rochester community. She said,

“There are a lot of opportunities in our community for physical activity for individuals with disabilities”

The interactive map below was created by Dr. Verwey and displays various options for Inclusive Recreation, Dance/Theater/Music/Art, Parks and Playgrounds, and TIES (Together Including Every Student) programming within the various school districts in our region. Although we have a lot here, we don’t have enough here and we need more, she said. Dr. Verwey wants the community to know that there are places you can go! This brochure was supported with grants from the American Academy of Pediatrics, Special Olympics, and The Hoekelman Center. A link to the brochure can be found at the bottom of this article.

Panelists at this event included members of local Rochester businesses and organizations such as - Healthi Kids, Rochester Accessible Adventures, Reconnect Rochester, Abilities Movement, and the Department of Recreation and Human Services

 

A Guide to Recreation and Leisure for All in Greater Rochester Brochure

The University of Rochester Intellectual and Developmental Disabilities Research Center is transforming the landscape of exploration

Monday, January 29, 2024

Photo of Student in EEG Booth

Batten disease is a devastating rare genetic disorder. While the genetic flaw that causes this disease is well known, scientists do not fully understand the connection between this mutation and the disease’s symptoms like behavioral changes, cognitive impairment, seizures, and vision loss. John Foxe, PhD, co-director of the University of Rochester Intellectual and Developmental Disabilities Research Center (UR-IDDRC), recently described a potential neuro marker for the disease that could represent a way to better understand this complex disease and, ultimately, help researchers measure outcomes in clinical trials.

“We [researchers] know it is a genetic single gene mutation that causes Batten disease and as a scientist that really gives us something to focus on,” said Foxe, who is also director of the Del Monte Institute for Neuroscience at the University of Rochester. “But clinically, what we do not fully understand is how the mutation changes connections in the brain. Our work has been aimed at developing a much better understanding of these changes and developing ways to measure these accurately. If we can figure out how to treat Batten disease, there's a very good chance we will gain insight into how to treat other rare diseases.”

The University is a recognized leader in Batten disease research and care and has been at the forefront of efforts to understand and treat this condition. The University of Rochester Batten Center (URBC) is designated as a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), highlighting its commitment and expertise in advancing both research and treatment for this disease. In 2020, when the National Institute of Child Health and Human Development (NICHD) designated the University as an IDDRC, the disease became the Center’s principal project, and researchers identifying biomarkers to evaluate the effectiveness of experimental treatments became a renewed focus for faculty at the Medical Center. Foxe’s latest research, published in the Journal of Neurodevelopmental Disorders, is one example of how the IDDRC designation is transforming the IDD research landscape at the Medical Center.

“We [researchers] know it is a genetic single gene mutation that causes Batten disease and as a scientist that really gives us something to focus on,” said Foxe, who is also director of the Del Monte Institute for Neuroscience at the University of Rochester. “But clinically, what we do not fully understand is how the mutation changes connections in the brain. Our work has been aimed at developing a much better understanding of these changes and developing ways to measure these accurately. If we can figure out how to treat Batten disease, there's a very good chance we will gain insight into how to treat other rare diseases.”

The University is a recognized leader in Batten disease research and care and has been at the forefront of efforts to understand and treat this condition. The University of Rochester Batten Center (URBC) is designated as a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), highlighting its commitment and expertise in advancing both research and treatment for this disease. In 2020, when the National Institute of Child Health and Human Development (NICHD) designated the University as an IDDRC, the disease became the Center’s principal project, and researchers identifying biomarkers to evaluate the effectiveness of experimental treatments became a renewed focus for faculty at the Medical Center. Foxe’s latest research, published in the Journal of Neurodevelopmental Disorders, is one example of how the IDDRC designation is transforming the IDD research landscape at the Medical Center.

Read More: The University of Rochester Intellectual and Developmental Disabilities Research Center is transforming the landscape of exploration