Studying the Spectrum

Local organizations partner to learn causes of autism

By Barbara Pierce

Five organizations in the Mohawk Valley have partnered to discover the causes of autism spectrum disorder.

These organizations signed an agreement to support research being done by the Masonic Medical Research Institute in Utica. The purpose of the agreement is contributing to research that is being done by MMRI into the causes of autism.

The organizations partnering with MMRI include the Kelberman Center, Resource Center for Independent Living, ADHD & Autism Psychological Services and Advocacy, and Upstate Cerebral Palsy.

“We’re very excited about it,” said Maria Kontaridis, director of research at MMRI. “Our hope is that we’ll identify things that will actually make a difference in people’s lives.”

“As we don’t treat patients here, having access to patient samples through collaborations with the organizations who serve those with autism is a great opportunity, so that we can begin to understand what’s going on and look at treatment,” Kontaridis said.

MMRI is an internationally recognized nonprofit medical research institute dedicated to scientific research that improves the health and quality of life for all. Its mission is to conduct high-quality research aimed at developing a deep understanding of diseases and generating innovative cures and treatments.

ASD is a developmental disability that affects an individual’s ability to communicate and ability to interact with others. Deficits and challenges vary greatly from child to child — no two children with ASD are the same.

Because of the wide range of abilities and disabilities, it is called a spectrum disorder.

According to the Centers for Disease Control, ASD affects nearly one in 59 children in the United States.

While ASD is incurable, the support of the four organizations will further the research to identify possible causes which will lead to better treatment for ASD.

“We’re pretty excited about this research that’s emerging here,” said Erik Jacobson, chief psychologist, Upstate Cerebral Palsy. “The researchers they’ve brought to this area are incredible, like Dr. Kontaridis.”

“Genetic research will help us understand the factors that are contributing to the rise in autism that we’ve been seeing. It’s a complex disorder; every kid is a little different,” Jacobson said.

For families that volunteer to be a part of the research, it will be easy, explained Jacobson. It is non-invasive and involves collecting saliva of persons in the project. “This is nothing for parents to be concerned about,” he noted.

“We’re already starting to profile families,” said Kontaridis. “We’ll collect profiles of families in the area and study affected and unaffected individuals to identify the genes that cause autism. A variety of genes could be involved.”

Genetic exploration

Kontaridis explained they are getting tissue samples from families with an affected family member, isolating their DNA, and then will attempt to determine which gene is causing the ASD.

“We hope that the preliminary data will generate more financing, as the project will probably be ongoing for years,” she added.

“We’re very excited about our recently formalized collaboration with MMRI and other organizations,” added Leah Phaneuf, chief clinical officer at The Kelberman Center. The center provides state-of-the-art programs and service for children and adults with ASD and their families.

“By joining forces as a community, we’re able to develop a stronger team to better our understanding of the assessment and treatment of autism,” she said. “To start, we’ll meet to align our efforts and define our direction for the future. We look forward to this collaborative adventure.”

“This is an exciting and promising collaboration,” said Andy Lopez-Williams, president and CEO of ADHD & Autism Psychological Services and Advocacy. His organization specializes in assessment and treatment of neuro-developmental disorders, including ADHD and autism.

“I am a native Utican and can speak directly to the history of brain drain from this region. MMRI and this recent collaboration is an important aspect of the intellectual revival in this region,” he said.

“We’re proud to partner with MMRI on research related to ASD,” he added. “We conduct thousands of diagnostic evaluations annually which provides great opportunities for our families to participate in research that fuels our understanding of ASD.

“For example, research conducted as part of this collaboration has strong potential to add to the scientific literature on the genetic underpinnings of ASD and relate those findings to the behavioral expression of ASD. Such understanding is critical to improvements in the prevention, assessment, and treatment of ASD.”

The partnership between these five prominent organizations benefits not only autism research but the entire community. By collaborating, the organizations showcase the innovative leadership within the Mohawk Valley.

According to those involved in the collaboration, the research won’t just benefit the Mohawk Valley, but will benefit communities throughout the world.

“Through the support of these organizations working together, autism research conducted here will allow for better knowledge and understanding of this disease in Utica and around the world,” Kontaridis saod. “We thank these organizations for their generosity and eagerness to help in the fight against ASD.”

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