Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Archive for the ‘fragile x’ Category

Montana teacher’s aides face felony abuse charges

Monday, October 26th, 2009

From ABC News (with video):

Two teacher’s aides are facing felony criminal charges for allegedly abusing Montana middle school students with disabilities last year.

Witnesses have accused Julie Parish and Kristina Marie Kallies of abusing 14-year Garret Schilling, who has Fragile X syndrome and limited verbal skills, by holding his head under running water, making him eat his own vomit, and leaving him sitting in his own feces for prolonged periods.

Other families have also come forward with allegations of abuse, including one report that a girl with cerebral palsy came home with chunks of hair missing.

The aides have resigned but deny the allegations.

See also:

Great Falls educators open window on special ed in wake of abuse charges — Great Falls Tribune

Editorial: Sunshine could help reassure special-needs community — Great Falls Tribune

Attorney general won’t investigate alleged school abuse — Great Falls Tribune

Special Ed Teacher Accused of Abusing Students — [Nashville, TN] WSMV

Lawsuit claims teacher abused special needs students — Nashville Newschannel5

Ruling: Sperm banks can be sued under product liability laws

Friday, April 3rd, 2009

From the Legal Intelligencer/www.law.com:

In what is being called the first decision of its kind, a federal judge has ruled that a sperm bank may be sued under product liability laws for failing to detect that a sperm donor had a genetic mutation.

U.S. District Judge Thomas N. O’Neill Jr. ruled that a 13- year-old girl with intellectual disabilities may proceed with a suit against a New York sperm bank under the theory that the sperm used to conceive her had a genetic mutation called Fragile X, which is linked with conditions including intellectual impairment and behavioral disorders.

“Under New York law, the sale of sperm is considered a product and is subject to strict liability,” O’Neill wrote.

The ruling makes it possible for Brittany Donovan of Philadelphia to pursue claims against a New York sperm bank that sold sperm to her mother, Donna Donovan, in 1995. The lawsuit says Donna Donavan was assured by Idant Laboratories that its donors were screened to make sure they had a “good genetic background.”

Rep. Harper promotes Fragile X awareness, research

Monday, March 9th, 2009

 (L-R) Livingston, Sidney, Gregg and Maggie Harper, greggharperforcongress.com photoFrom The Hill:

Representative Gregg Harper (R-Miss.), whose son has Fragile X syndrome, welcomed advocates for people with the condition to Capitol Hill last week. Their goal: To raise awareness for the condition and pressure Congress for medical research funding.

The event was attended by 130 advocates from 35 states.

“We just want to make sure that when they are slicing up the pie that Fragile X is looked at, because it hasn’t gotten as much as it needs,” said Harper, who said he is the only member of Congress who has a child with Fragile X.

He described his son Livingston as “a blessing on everybody’s life.” Nineteen-year-old Livingston goes to community college and works in a restaurant.

See also: Gregg Harper launches PSA on Fragile X syndrome — The Meridian [MS] Star

Video of the public service announcement is here.

(Photo from greggharperforcongress.com)

Drug research hints at reversal of autism, Fragile X symptoms

Tuesday, September 23rd, 2008

From NPR:

Scientists at MIT are studying Fragile X syndrome, a genetic mutation that can cause intellectual disabilities and autism. They say they may have identified a way to use medication to regulate brain cell connections in people with Fragile X. So far the drugs have only been used in mice, but they are now being tried in humans. One small study found that a single dose of a drug had an effect.

“It’s a dream come true to think that we have the prospect of having gone from really basic science discovery to a potential treatment,” says Mark Bear, who directs the Picower Institute for Learning and Memory at MIT.

The research has been funded in part by a group that was started by parents of a young man with Fragile X.

Fragile X may hold secrets to autism

Thursday, July 3rd, 2008

From Time magazine:

An explosion of research into Fragile X syndrome is yielding information that may help scientists understand and treat autism, and possibly some other conditions as well.

“Fragile X is leading the autism field in terms of new treatments,” says pediatrician Randi Hagerman, medical director of the MIND Institute at the University of California, Davis. “We know the gene, we know a lot about the biology, and we know how to fix it. That’s pretty exciting!”

The disorder is caused by a gene on the X chromosome. It affects roughly 1 in 2,500 boys, leading to autism spectrum disorders in about half of them.

A stage of hope

Friday, March 28th, 2008

disability news and commentary, cast of FootlooseAll but 5 of 41 cast members have developmental disabilities, but each one feels ‘Footloose’

An intimate and perceptive piece by Drew Jubera in the Atlanta Journal Constitution about a local theater production starring people with intellectual disabilities.

Some quotes to ponder:

“I’m a bagger by morning, an actor at night.” Katie Rouille, 27

“A lot of people say I can’t do something, and I just say I can. I’m determined that way.” Cynthia Outman, 31, who has Down syndrome

“I do it for the same reason real actors do it: to get away from who I am and be someone else. It’s challenging every day to do things. But this shows people with disabilities ‘you can do it.’ Linda Danzig, 57

“These are the people behind the bakery counter in Publix or bagging your groceries who you may not have noticed until they came here and are under the lights. It does for them what theater does for anybody. The shy checkout girl who takes a theater class and finds her voice.” Kim Goodfriend, the theater’s founding producer

“There are more similarities than differences. Every actor is sensitive. They’re ripping their chest cavity open and exposing themselves to failure. ” Dina Shadwell, the theater’s director

Genetic engineering corrects Fragile X in mice

Thursday, December 20th, 2007

From Reuters:

Genetic engineering can correct the worst symptoms in mice with Fragile X syndrome, the most common inherited cause of mental retardation and autism, U.S. researchers reported in the journal Neuron.

They said it is possible a drug could do the same thing, perhaps providing a treatment for Fragile X syndrome and other causes of retardation and autism, too.

Fragile X causes seizures, impaired memory, learning disabilities, hyperactivity, severe mental retardation and accelerated body growth. It affects 90,000 to 100,000 Americans. There is no treatment.

The mutation in mice was created by investigator Mark Bear at the Massachusetts Institute of Technology.

Related links:

Gene therapy ‘corrects Fragile X’ — BBC

A fix for one type of autism — Time Magazine

Gene tinkering cures autism symptoms in mice; Pill in the pipeline could have same effect in people, scientists say — MSNBC

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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