Press Room Home > March 2017 Archives

HudsonAlpha's 'Childhood Champion' is raising awareness on genetic disorder research

03/29/17
WAAY 31 is partnering with HudsonAlpha Institute for Biotechnology in Huntsville to sponsor the 2017 Double Helix Dash.

Proceeds from the event fund research on genetic disorders.

This year's childhood champion is Anna Brooke Ainsworth. Ainsworth's mom, Miranda, knew Anna Brooke was not developing as quickly as she should and sought out a solution.
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Searching for a place to call home

03/27/17

Marie Sabine has spent years worrying about where her daughter will live and what kind of help she will get as both of them get older and, eventually, Marie dies.

Her daughter, Tracie Sheppard, now 48, was born with a rare genetic abnormality called Cornelia de Lange syndrome, which resulted in both physical and mental impairments. She will need her own place, one where she gets support, for life.

She is part of a new generation of people with similar issues who can no longer easily be shipped off to institutions, group homes or home shares - the solutions of the past.

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Geneticist Dr. Laird G. Jackson receives David L. Rimoin Lifetime Achievement Award

03/23/17

Laird G. Jackson, MD, FFACMG, is the recipient of the 2017 ACMG Foundation David L. Rimoin Lifetime Achievement Award.

The 86-year-old Dr. Jackson, a professor of obstetrics, gynecology, and medical genetics at Drexel University College of Medicine, was honored for his commitment to teaching, his leadership in the field of prenatal genetic screening, and his decades of work surrounding the characterization and treatment of Cornelia de Lange Syndrome.

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Another family who loves foster children

03/20/17
Philip and Shelli Olson have been doing foster care for years. They have adopted six of their foster kids. They have had one little girl from birth who has Cornelia de Lange syndrome and when they found out about her sister, who also has it, they adopted her as well.
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