Her little pony : Miniature horse provides a spark in the life of a terminally ill child

April 14, 2011

Her little pony : Miniature horse provides a spark in the life of a terminally ill child

Santa Barbara News-Press | April 13, 2011 | By Karna Hughes

Horses have always held a special place in the hearts of little girls. Maybe it’s the way their manes hang down — kids can’t help wanting to run their fingers through them. Or maybe it’s how powerful the animals are, the way they seem like they can vanquish anything as they gallop around.

The family of Gwendolyn Strong, 3, may never know exactly why she loves horses, because her mouth can’t form the words to tell them.

Diagnosed at 6 months old with type I spinal muscular atrophy, she has to wear a respirator to help her breathe because the muscles around her lungs have atrophied.

But it’s clear how much Gwendolyn is thrilled by ponies in the way her big blue eyes light up when she sees one. The sight of a horse will also cause her to make what her mom, Victoria, calls her “happy sound” — guh, guh, guh!”

Cognitively, she’s just the same (as other 3-year-olds) but the disease is degenerative, so as time goes on, she’s more and more impacted,” said Mrs. Strong, 34, a Santa Barbara resident.

Spinal muscular atrophy, which affects nearly one in every 6,000 babies, causes wasting in every muscle in the body and has no cure. It’s a terminal disease; most children who have type I die at 2 years old.

Gwendolyn can’t sit, stand, walk, eat or breathe without assistance. So she’s supported by a battery of machines, including a feeding tube, a suction device that helps her swallow, and heart-rate and oxygen monitors.

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RED hosts evening of events for disability awareness

April 12, 2011

RED hosts evening of events for disability awareness

The Daily Targum | April 12, 2011 | By Chase Brush

Students bowled blindfolded and raced using wheelchairs last night during the University’s first Disability Awareness Day, an event hosted by Rutgers Empowering Disabilities (RED), to celebrate Disabilities Awareness Month.

Representatives from disability advocacy organizations and New Jersey Metro Chapter of the National Multiple Sclerosis (MS) Society gave lectures on disabilities while RED performed skits about awareness in the Multipurpose Room of the Rutgers Student Center on the College Avenue campus.

“Disabilities are an extra obstacle that students have to overcome, and there was no organization that serves disabled individuals before, so we wanted to spread awareness as one of the University’s few disabilities groups,” said Vera Kiyanchenko, vice president and co-founder of RED.

RED aims to empower those with disabilities at the University and in the community, and provide them with sources of inspiration and motivation, said Kiyanchenko, a School of Arts and Sciences senior.

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Hanover Girl Raps For Easter Seals

April 5, 2011

Hanover Girl Raps For Easter Seals

Bayshore Broadcasting | April 5, 2011 | By Robyn Garvey

Click HERE to read more and listen to Natalie’s awesome rap!

11 year old Natalie McDonald of Hanover is taking on a fun new project — and she is hoping Grey and Bruce residents will help her out.

Natalie has created her own rap song, explaining why she loves going to Easter Seals camp.

Her rap song is on YouTube and you can find it by typing in Easter Seals Rap.

Natalie’s Mom Christina McDonald is encouraging residents to visit the site and push the LIKE button.

The top video’s will appear on the Easter Seals Telethon on Sunday April 10th.Voting closes on Thursday April 7th.

McDonald says the project is her family’s way of sharing why they love Easter Seals Camp.

She says it’s the one place where children with disabilities can go and forget about their challenges and instead focus on having fun and being a kid.

Natalie has been going to Easter Seals Camp for years.

She suffers from Spinal Muscular Atrophy a genetic disease that attacks the nerve cells in the spinal cord.

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‘American Idol’ Star Robbie Rosen Sings at Legislature

March 24, 2011

‘American Idol’ Star Robbie Rosen Sings at Legislature

MineolaPatch | March 24, 2011 | By Geoffrey Walter

By now, 17-year-old Robbie Rosen is used to performing in front of crowds.

The junior from Calhoun High School finished this years’ “American Idol” competition in the Top 24 after his renditions of Paul McCartney’s “Yesterday,” “Moody’s Mood for Love,” “I Want You Back” and “Got to Get You Into My Life” in the group performances, and Elton John’s “Sorry Seems to Be the Hardest Thing” to move him through the various rounds of the FOX show’s competition.

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Castle Rock boy beating the odds

March 23, 2011

Castle Rock boy beating the odds

FOX (Denver) | March 23, 2011 | By Ginger Delgado

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CASTLE ROCK, Colo. — A five- year-old boy from Castle Rock with a rare genetic disorder is beating the odds, thanks to his family who won’t give up.

Reece Rubino was not supposed to live past the age of two, according to his doctors, but his parents fought to keep him alive and give him hope.  Reece was born with Spinal Muscular Atrophy or SMA.

There are different types of the disease, but Reece has the most severe — Type One — which paralyzes children from head to toe.  It’s a deadly disease for which there’s no cure.  But Reece is living, learning and defying the odds.

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Raising awareness for Spinal Muscular Atrophy at Aquin

March 16, 2011

Raising awareness for Spinal Muscular Atrophy at Aquin

JournalStandard.com | March 15, 2011 | By Hilary Matheson

The Aquin chapter of Highland Servant Leaders is using this week to tell classmates about disability awareness.
Nine Aquin students have researched various disabilities and will give presentations throughout the week. Many students chose disabilities that have touched their lives.

Senior Elizabeth Bald researched Spinal Muscular Atrophy (SMA), a rare genetic disease. Bald invited the Murray family: parents Jodi and Aquin alum Steve; and their sons, Andrew, 11, and Patrick, 7, of Winnebago, to talk about SMA. Andrew Murray is a Winnebago Middle School fifth-grader and his favorite subject is physical education. Andrew also has SMA.

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Fans to choose paint scheme for NASCAR Goody’s 500

March 14, 2011

Fans to choose paint scheme for NASCAR Goody’s 500

Examiner.com | March 13, 2011 | By Greg Engle

Many NASCAR sponsors find innovative ways to highlight their brands. One of NASCAR’s oldest sponsors has found a way to not only highlight their brands, but two important charities as well.

Goody’s has been around NASCAR for decades and been the presenting sponsor of the spring race at Martinsville for several years. This year has part of their campaign leading up to the race on April 3, Goody’s is launching a contest that will highlight both the Wounded Warrior Foundation and the Victory Junction Gang Camp.

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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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Spinal muscular atrophy: Meet a toddler who suffers

February 16, 2011

Spinal muscular atrophy: Meet a toddler who suffers

WTSB | February 16, 2011 | By Stefanie Fogel

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Tampa, Florida – Each and every morning a strict regiment is played out and it’s never easy for Shirley and Joe Cuadrado. Their grandson Christian is a small frail little boy who can’t do for himself.

Shirley Cuadrado, “I’ve become a radical grandmother on a mission to get a cure.”

Christian suffers from a disease called spinal muscular atrophy, otherwise known as SMA. It’s an extremely rare disease that affects 1 in 24,000 babies. It causes muscles to deteriorate and can lead to severe respiratory problems, among many other afflictions.

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Actress hits out at battle for disabled

February 7, 2011

Actress hits out at battle for disabled

EveningTimes | February 7, 2011

River City star Eileen McCallum today spoke out about the battle faced by young people with a disability to achieve the life they deserve.

It comes as a new report found there were “shocking inequalities” in the jobs market and leisure industry.

People with a disabilities also face difficulties in using public transport – even though transport providers are legally required to make “reasonable adjustments” for disabled passengers.

The report was put together by campaign group Trailblazers Scotland, which is backed by charity the Muscular Dystrophy Campaign.
It found some 90% of people said they had been put at a disadvantage by the job application process, and half had never had a paid job.

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