FightSMA to host panel discussions on spinal muscular atrophy

April 30, 2011

FightSMA to host panel discussions on spinal muscular atrophy

News Medical | April 30, 2011

International non-profit organization FightSMA will be hosting highly respected experts from across the country on Thursday, May 5, 2011 for a series of panel discussions, Thriving with SMA: LIVE! This panel is a unique, one-of-a-kind series of presentations from influential leaders in the fields of pulmonary issues, orthopedics, nutrition, neurology and clinical trial.

FightSMA will be joined by families, friends, healthcare professionals and more for this historic presentation. In addition, the panel will be offered online with free and unlimited access via the web broadcasting service, UStream. The panel will be live broadcast from 9:00am EDT to 2:00pm EDT on the FightSMA website (www.fightsma.org). Attendees can register for the webcast, as well as submit questions for the panelists by visiting the FightSMA website and pointing towards the “Celebrating 20 Years” block.

“There are hundreds of families across the U.S. and across the globe who simply cannot physically attend the conference for various reasons,” said FightSMA President and founder, Martha Slay. “So, on May 5, we’re bringing the conference to them! Families will be able to ask questions of SMA experts in the areas of nutrition, exercise, pulmonary issues, and clinical trials. This is unprecedented and it’s free, and can be attended from your own computer. Go to www.fightsma.org for more details.”

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Spinal muscular atrophy doesn’t stop Harvard-bound Lakes senior

April 29, 2011

Spinal muscular atrophy doesn’t stop Harvard-bound Lakes senior

Army.mil | April 27, 2011 | By Marisa Petrich

JOINT BASE LEWIS-McCHORD, Wash. — Chanel Washington has a lot going on for a high school senior.

She’s on the Youth Council of Lakewood, and involved in Knowledge Bowl, French Club and student government. She was state president of DECA, an organization for students interested in business and marketing, and she loves going to rock concerts.

She’s been accepted to four Ivy League universities. She’s also been in a wheelchair since she was 5 years old.

Chanel has spinal muscular atrophy, an inherited disease that causes muscles to progressively degenerate. Most people with SMA die as children. But Chanel doesn’t let anything hold her back.

“Like I said, (my disease) makes things difficult, but I think even more it pushes me even further,” she said.

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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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Author’s style and “robots” inspire students

March 16, 2011

Author’s style and “robots” inspire students

Volunteertv.com | March 15, 2011

Cool hip tunes blasted the library at Claxton Elementary School as author Sigmund Brouwer of Nashville, entertained the students with his Rock -n-Roll Literacy Show.

He says, “Good songs, like good stories make you feel something. That’s my pitch to kids. Grab a story and you get lost in it like you get lost in a good song.”

One of the students Connor Murphy has been reading a series of bBouwer’s books called Robot Wars.

“They are about a kid (in a wheelchair) who can control robots through his brain, and solves the mysteries through his brain,” according to Brouwer.

Lise Murphy says, “It’s been wonderful, “it’s been a great addition to his Christmas gift.”

Connor’s mom says the books were a Christmas gift Connor enjoyed so much, the family tracked down Brouwer to visit the school.

“Connor got hooked on them, he and my husband read them nonstop for about two months.”

Lise says Connor can easily relate to the stories, he has Spinal Muscular Atrophy and lost most use of his muscles, but has plenty of brain power, like the boy in the books.

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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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Disability no barrier to top scorers Low, Rifaat

February 21, 2011

Disability no barrier to top scorers Low, Rifaat

The Sun Daily | February 21, 2011 | By Shirlyn Preeta

KUALA LUMPUR (Feb 21, 2011): Being disabled was no barrier for success for Low Hong Ping and Mohd Rifaat Hussin, who were both top scorers in last year’s Sijil Tinggi Persekolahan Malaysia (STPM) examination.

Low, from SMK St John, Kuala Lumpur who suffers from spinal muscular atrophy, scored four As in the STPM examination.

“I studied two hours everyday consistently. Besides that, I always pay attention during all lessons in school,” said Low after the results were announced today.

Low added that he did not attend any tuition classes but his family, teachers and friends were always there to give him support and encouragement, which led to his success today.

“I am planning to further my studies in economics and be a successful economist one day,” added Low.

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Network of caregivers shuttles children and families through the complex world of critical and life-ending illness

February 17, 2011

Network of caregivers shuttles children and families through the complex world of critical and life-ending illness

Monterey County Weekly | February 17, 2011 | By Adam Joseph

Cynthia Guzman was diagnosed with sulfite oxidase deficiency, a rare metabolic disorder, when she was only 6 days old. Doctors predicted she would die within a few months.

“We cried a lot,” says her father, Jose. “They said they weren’t going to be able to do anything.”

Seven years later, Cynthia is living in North Salinas and, according to her doctors, is the world’s longest-living sulfite oxidase deficiency patient. She can’t walk or talk, nor can she breathe, swallow or eat on her own. Someone has to keep an eye on her at all times to make sure she doesn’t suffocate on her saliva. Her team of pulmonary, neurology and gastrointestinal specialists at Lucile Packard Children’s Hospital at Stanford have no idea how long she’ll live.

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