Disabled kids, educators rally at the Capitol

March 10, 2011

Disabled kids, educators rally at the Capitol

Times Union | March 10, 2011 | By Casey Seller

An estimated crowd of 600 disabled students, family members and educators joined legislators this morning in the well of the LOB to call on Gov. Andrew Cuomo to pull back on an element of his budget proposal that would change the way “4201″ schools are funded. New York has 11 state-supported private schools that work with 1,500 student who are blind, deaf, or fall within an additional range of disabilities.

Under the current system, 10 percent of the cost of each pupil is covered by the local school district, while 90 percent is picked up by a discrete state appropriation distributed by the Education Department. Cuomo’s budget proposal would require the local district to pick up the tab, as is the case with other special education schools. The state would then reimburse 85 percent of the remaining cost, throwing the remainder back on the district. The end result would be a 13.5 percent reduction in state spending on the schools on average, although the cut sustained by each school would be up to the individual district.

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Munro keeps ‘Cats ahead in numbers game

March 10, 2011

Munro keeps ‘Cats ahead in numbers game

The Herald-Mail | March 4, 2011 | By Tim Koelble

WILLIAMSPORT — Austin Munro is an important part of the Williamsport boys basketball team.

He just doesn’t wear a uniform.

The 18-year-old senior was diagnosed with spinal muscular atrophy, a neuromuscular disease, at birth. He has been in a wheelchair since he was 2, but that has only kept him from being physically active in sports.

“I really haven’t thought of the disease as a big deal,” Munro said. “It’s never held me back.”

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Pride of Somerset Youth Awards: Becka Abson

March 9, 2011

Pride of Somerset Youth Awards: Becka Abson

thisisthewestcountry.co.uk | March 9, 2011 | By Alex Cameron

THE deeds of 17-year-old Becka Abson, of Taunton, epitomise the word ‘friendship’ and earned her a Sandy Padgett Award at the Pride of Somerset Youth Awards.

She received her certificate from Ken Padgett, husband of Ch Supt Sandy Padgett, who was in charge of policing in Taunton at the time she died.

Becka has been a loyal friend to a girl called Jasmine for the last ten years – and it was Jasmine’s mum Tina who nominated her.

Jasmine has Spinal Muscular Atrophy and is a full-time wheelchair user who needs continuous support.

That support often comes from Becka, who thinks nothing of washing or dressing Jasmine or helping her take her medication.

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Cheeky Charlie Bolton less than £4,000 away from life changing wheelchair

March 9, 2011

Cheeky Charlie Bolton less than £4,000 away from life changing wheelchair

News Shopper | March 9, 2011 | By Michael Purton

THE parents of a 17-month-old disabled boy are less than £4,000 away from raising enough money to buy him a powered wheelchair.

Charlie Bolton, of Haydens Close, Orpington, has spinal muscular atrophy type two, and cannot crawl, kneel, stand, walk or sit up from a lying position.

His parents Aimee Spiers and Edward Bolton are trying to raise £18,000 to buy him an electric wheelchair, which is currently not available on the NHS.

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This gang is ready to Walk and Roll

March 9, 2011

This gang is ready to Walk and Roll

The Charlotte Observer | March 9, 2011 | By Jessica Millicevic

Michael Gray Dougherty, known to friends and family as Gray, is a happy, independent 12-year-old boy.

He likes to play chess and Xbox, and he competes on the National Academic League team at Alexander Graham Middle School. He lives in Sharon Woods with his mom, Abbie, dad, Mike, and 8-year-old brother, Riley.

Gray also has a rare muscular disease: Spinal Muscular Atrophy. Diagnosed when he was 10 months old, Gray has limited voluntary muscle movement and has been in a power wheelchair since he was 2. Every five years, Gray graduates to a new wheelchair to fit his changing needs and size.

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Child’s death inspires half marathon runners

March 8, 2011

Child’s death inspires half marathon runners

SouthCoastTODAY.com | March 8, 2011 | By Don Cuddy

NEW BEDFORD — It is difficult to imagine the grief that accompanies the death of a 2-year-old child. But the Simmons family of New Bedford has found solace in the knowledge that the loss of their son, Owen, to a childhood disease in 2009 has inspired dozens of men and women to get out and train for this year’s New Bedford Half Marathon.

The runners are dedicating their efforts to raise awareness of spinal muscular atrophy, a leading cause of death in infants and toddlers. One in 6,000 babies is born with SMA, a motor neuron disease that attacks voluntary muscle movement and leaves children trapped inside their own bodies.

Many of the runners are novices but have drawn inspiration from the leadership of Stephen Taylor, a resource police officer at New Bedford High School. Andrew Simmons, Owen’s father, is a New Bedford police detective and a colleague of Taylor.

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Run for Reece coming together

March 4, 2011

Run for Reece coming together

The Intelligencer | March 3, 2011 | By Jerome Lessard

Baby Reece Elliot will be remembered this summer.

On Sept. 8, 2010 — just seven weeks old and diagnosed with spinal muscular atrophy (SMA) Type 1 — Reece died in his mother’s arms.

On Sunday, July 17, Karen Walsh will be hosting the first Run for Reece at the Bayshore Waterfront Trail in Belleville, in means to raise funds for Families of SMA and the Belleville General Hospital Foundation (BGHF).

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Scientists from Genzyme Corporation and ISIS Pharmaceuticals Publish Paper Showing Antisense Oligonucleoties (ASOs) Ameliorate Symptoms in a Severe Mouse Model of Spinal Muscular Atrophy

March 4, 2011

Scientists from Genzyme Corporation and ISIS  Pharmaceuticals Publish Paper Showing Antisense Oligonucleoties (ASOs) Ameliorate Symptoms in a Severe Mouse Model of Spinal Muscular Atrophy

Science Translational Medicine (via FSMA) | March 4, 2011

It was reported in the journal Science Translational Medicine that ASOs designed to correct splicing of the SMN2 gene improve symptoms in a severe mouse model of Spinal Muscular Atrophy when delivered directly to the CNS.

Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disorder caused by mutations in the SMN1 gene that result in a deficiency of SMN protein. One approach to treat SMA is to use antisense oligonucleotides (ASOs) to redirect the splicing of the SMN2 gene to boost production of functional SMN.

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Saturday triathlon to benefit Gwendolyn Strong Foundation

March 4, 2011

Saturday triathlon to benefit Gwendolyn Strong Foundation

Daily Sound | March 4, 2011 | By Nick C. Tonkin

This Saturday you can you can perform all the events of triathlon, while leaving your wetsuit, bike, and sunscreen at home and fight spinal muscular atrophy at the same time.

And don’t worry about the weather. Killer B Fitness is hosting Gwendolyn’s Indoor Triathlon, a charity event to benefit the Gwendolyn Strong Foundation, a non-profit dedicated to raising awareness and funding research on spinal muscular atrophy.

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Tristram keeps rolling with the hits

March 2, 2011

Thank you to Steven Parry for sharing this great, inspiring article with us.

Tristram keeps rolling with the hits

The Courier-Mail | February 5, 2011 | By Mike O’Connor

TRISTRAM Peters was waiting for me in his wheelchair. “It’s for you, to give you an idea what it’s like,” he says, pointing to an empty wheelchair.

“You steer with this,” he instructed, pointing to a joystick on the armrest as I slid awkwardly into the chair.

I pushed the stick forward with my right hand and accelerated across the room, clutching the plastic hockey stick he had just given me in my other hand.

For the next 10 minutes we both whirred across the floor at MontroseAccess – a rambling complex at Corinda which offers therapy and respite for children and young adults with physical disabilities – as Peters schooled me in the art of wheelchair hockey.

Peters is 20 and knows about wheelchairs, having been in one since he was four.

“I’ve got spinal muscular atrophy type 2, which is a form of muscular dystrophy. It was an early progression so I never really walked,” he says.

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