Photo credit: Jim Willet
“What’s your why?”
It’s a question we hear a lot around Civitan. Responses tend to vary, but nothing is more common than, “I have a ______________ who lives with ______________.” More often than not, the disorder or disease that impacts their lives is one being researched at the Civitan International Research Center.
If you were to ask Helen Root, a third-year research student at the University of Alabama at Birmingham (UAB) what was her why for pursuing a career in research, her response would sound very similar to that of most Civitans.
Helen Root first became interested in researching autism because she has a cousin who is living with it. She’s known, since she was a child, that she wanted to work with children with developmental disabilities because of her cousin. Since then, Helen’s interests have become far more defined and focused.
The Civitan-Sparks Clinics at UAB serves a multidisciplinary program that focuses on evaluating and treating a variety of developmental concerns. When a child is referred to the clinic, they are assessed by a wide range of professionals and trainees representing a multitude of disciplines to give the most well-rounded diagnosis and approach to treatment.
Root’s mentors, Dr. Sarah O’Kelley and Dr. Kristi Guest, worked together to develop a database with the Autism Spectrum Disorders clinic at the Civitan-Sparks Clinics. The database allows researchers to review past medical records and past intervention history of patients who come through the Autism Spectrum Disorders Clinic.
“That gives us a rich data set through which we can examine what differences there are between these children,” says Root, “This essentially allows us to hone in on what the most important behaviors are for a diagnosis of autism. So this is a really rich data set that we use.”
Early detection and early intervention are two areas of concern within autism research that interest Root the most. “While those concerns related to development emerge before the age of two,” Root shares, “[however,] the average age of diagnosis in the United States is 4 years old. So that means there’s a two-year gap between when symptoms are first being noticed and when children are diagnosed.” Root firmly believes a child is given a better chance of reaching their maximum developmental gains if they are given the opportunity to be diagnosed sooner and therefore introduced to proper interventions at an earlier age.
This past October, Helen Root received a Civitan International Research Center Emerging Scholars award for a project that will launch this fall. Root won the award when she combined her passion for autism research and her interest in genetic disorders. Specifically, Root will devote time and resources to better understand the prevalence of autism in children living with Pitt Hopkins Syndrome, a rare genetic disorder with only 500 recorded cases throughout the entire world. Root’s winning proposal has the potential to serve and help individuals living with Pitt Hopkins, and their families, within their lifetime.
Root will travel and spend time with individuals with Pitt Hopkins Syndrome to help her better understand the disorder, which will help her develop viable treatment options while also establishing early detection signs.
“I’m really hoping to get a lot out of this study that can be used to turn around quickly and can go into improving their lives,” says Root.
Helen Root has also received two travel awards from the Civitan International Research Center to travel to conferences and meet families with children living with Pitt Hopkins, who ignited her passion to focus her research in this area. She has also received a travel award to attend the International Society for Autism Research annual convention to present data that she found at the University of Alabama at Birmingham.
Root’s appreciation for Civitan’s support of her work is one that is heartfelt and genuine. Civitan looks forward to cheering for Root as she continues her journey, positively impacting the lives of so many in this and future generations to come.