June 23, 2021

Accessing Genetic Resources for Children with Special Needs (Video)

- Future In Sight

young visual impaired girl using assistive technology to use a tablet

Last month, NH Parent Connect hosted an online discussion with guest speaker Ed Kloza, a genetics consultant to the New England Regional Genetics Network. He received his degree in Human Genetics and Genetic Counseling from Rutgers University, and has co-authored over 35 articles in the medical literature. Ed has extensive experience in genetic education of primary care clinicians and the general public.

Also guest speaking was Karen Volle, she is the Project Manager of the New England Regional Genetics Network with the Institute on Disability/ UNH.  Karen has a strong background in human services working in two program areas: genetics, and employment for people for people with disabilities.

Children with visual impairment and blindness is rare, consequently the causes of the visual conditions are even more rare and some are linked to a genetic condition. The NH Parent Connect monthly May zoom meeting provided a unique opportunity for parents to learn from experts in genetic counseling and resources an introduction to genetics, why testing may be important, the implications of familial genetic make up for other family members and the many resources available to help manage your child’s care. The parent meeting provides a supportive environment for you to ask questions and to voice your concerns.

As stated by Ed Kloza, “The main objective for our presentation is to help families better understand genetics so that they and their caregivers can provide better care.”

Please enjoy this video of the presentation, and contact us if you would like more information or have questions.