She also served as Director of Operations of ACEing Autism from 2008 through 2015. She was the Clinical Research Coordinator for the Division of Developmental Medicine Laboratory of Cognitive Neuroscience, Boston Children’s Hospital, working on collaborations with scientists from MIT and Harvard examining several clinical populations, including autism. This experience got her interested in the processes associated with brain development during the neonatal period into adolescence and that factors that can affect normal development. While there she joined a research lab at the Center for Neurobehavioral Development. Vanessa grew up on a family dairy farm in rural Wisconsin she then went on to college at the University of Minnesota-Twin Cities, where she studied Chemistry, Biology, and French. All Alliance families are grateful to Donna and Brenda for bringing us all together to continue to “figure this out.” Starting as a list of 13 families raising children with chromosome 15q duplications, the support group grew. We would like very much to find someone with 15q+.” This was the birth of IDEAS in 1994. The mother wrote, “Our daughter…has a disorder of the 15th chromosome…The disorder seems to have affected all areas of her development…we have never been able to find any documentation on this exact disorder. One day Brenda noticed a letter from a parent in a 1990 issue of Exceptional Parent Magazine. They did not know of any other people who had the same or a similar diagnosis. There was no literature about this condition. In 1992, Josh was diagnosed with an inverted duplication of his 15th chromosome (today referred to as isodicentric chromosome 15 syndrome or idic(15) ). Brenda told Donna, “I don’t know what has caused this, but together we are going to figure this out.” Donna and Brenda became a powerful team. Then one day in 1987, Donna and Josh walked through the doors of Elwyn Institutte in Elwyn, Pa., and met Brenda Finucane, a genetic counselor. She had no diagnosis or information to help her. His s ymptoms included developmental delay, hypotonia of muscles, impaired cognition and speech, and seizures. Donna Bennett, Co-Founder, Board Member Emeritusĭup15q Alliance was originally founded under the name of IsoDicentric 15 Exchange, Advocacy and Support (IDEAS) in 1994 by Donna Bennett, mother to Joshua (a young man with idic15) and Brenda Finucane, MS, CGC the Director of Genetic Services at Elwyn Inc.ĭonna Bennett did not have a name for the symptoms of her son Josh for the first 11 years of his life.

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