Press Room Home > April 2017 Archives

'When you wish upon a star'

It's not every little girl who gets greeted by Snow White at the Blue Bunny Ice Cream Parlor, but that's what happened for five-year-old Skylar Olson Thursday.

The Make-A-Wish Foundation granted Skylar's wish to visit Disney World in Florida.

Attending were Skylar's parents, Justin and Trista Olson, her sister, Jordyn, 8, and brothers, Jayden, 9 and Wyatt, 3, Make-A-Wish volunteers and local Farm Bureau Financial Services representative Mark Frentress.

Trista explained Skylar has a rare gene disorder, Cornelia de Lange syndrome.
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Fountain City family hoping for service dog

A Fountain City family is doing all they can to give their little boy some independence, that freedom would be in part because of a service dog.

Christie Rouse's youngest son, Payson, was born with a rare genetic disorder called Cornelia de Lange syndrome (CdLS). The six-year-old was recently approved for his very own service dog. The only problem is that the service dog costs between $13,000 to $15,000.
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Regulator of chromosome structure crucial to healthy brain function and nerve development

Cohesion controls gene expression and chromatin structure, as well as enabling chromosomes to separate correctly immediately prior to cell division. Mutations in the genes encoding proteins that regulate cohesin and cohesin protein itself cause the developmental disorder Cornelia de Lange syndrome (CdLS). This genetic knowledge hinted that the disease does not result from faulty chromosome separation but rather from structural defects in the chromosome.
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Going mainstream: Parents share mixed views as Northampton prepares to launch a new special education model next school year


City mom Erica McMahon said classroom "inclusion" looks good on paper, but there are children for whom mainstream education simply won't work. She says her son, who attends R.K. Finn Ryan Road Elementary School, is one of them.

That's not the case for another Ryan Road parent, Suna Turgay, who thinks inclusion will be great for her 10-year-old son. She said her son, who has Cornelia de Lange, a genetic mutation, currently spends much of his day outside the general education classroom receiving speech and physical therapies.

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Sweet Passover treat offered for special needs Jewish congregants

Some people have seders on the first night of Passover, some have them the second. And some, like those at Congregation Beth Shalom on Sunday, have chocolate seders.

Beth Shalom Cantor Steven Stoehr founded HUGS - Healthy Understanding, Growing Spaces - to give special services to those who wanted or needed them...He said he sought to open the area's worship community to people who had a hard time clearing hurdles, to "get us out of our own silos."

Mikayla Needlman, 11, came to her first HUGS event Sunday, said her father, Marc Needlman. She has Cornelia de Lange Syndrome, which for Mikayla means developmental delays, said her father.
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