Kids with a rare neurological disorder converged in Houston to meet others from around the world
Mark LeMaire, whose daughter is a HADDS patient, wears a HADDS pin on his shirt as he and his family attend the EBF3-HADDS conference at the Duncan Neurological Research Institute Thursday, Jul. 21, 2022 in Houston, TX.Many of the children and young adults had never met before they traveled from across the globe to gather in Houston. They were brought together by a shared diagnosis that, until six years ago, had been a mystery.
Denholm Willmer, 25, traveled flew in from Australia. He and his mother are the first known instance of a mother and son sharing the condition. She spent her summers volunteering at her mother’s school, and saw first-hand the challenge of teaching children with significant disabilities.Her first introduction to what was eventually identified as HADDS came during her medical residency in the Dr. Hugo Bellen’s lab at Baylor. The first case assigned to her was Chase Morita, a Hawaii boy who was part of a clinical study through the National Institutes of Health’s Undiagnosed Diseases Network.
The lab pointed them to two more children, including a 5-year-old girl from Houston. Chao and Wangler met with the Houston girl. Collette eventually took a genetic test, and the results showed a mutation in her EBF3 gene. Chao delivered the news that Collette had HADDS in 2016, months before she and her colleagues publicly revealed their discovery of the disorder. Ashley LeMaire said she’ll never forget the phone call.
“It just made all the sense in the world that we should be doing this,” Mark LeMaire said. “It was obvious that this doesn't happen to everyone, and we really wanted to be able to take our experience and use that to help grow the community.”It’s unclear what causes a mutation in the EBF3 gene. Strong mutations can just occur in an individual, while milder mutations can run in a family, Chao said. Those stronger mutations will cause more severe symptoms.
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