SMAHeadlines.com

In a Perfect World: A Law to Cure Paralysis — Paid for by Those Who May Cause It!

February 2, 2011

In a Perfect World: A Law to Cure Paralysis — Paid for by Those Who May Cause It!

The Huffington Post | February 2, 2011 | By Don C. Reed

A two-year-old runs out on a neighborhood street — just as a reckless driver roars around the corner.

A screech of brakes, a scream of fright — but a hand snatches the toddler back, just in time. The parent hugs and soothes the terrified child, the car disappears in the distance… and its driver gets away with a crime that could have ruined a life, and a family.

In a perfect world, a siren would sound, a red gumball would start blinking, and the neighborhood would applaud the driver’s capture, and the impounding of the car.

We do not live in a perfect world. But we can and should hold drivers accountable for their vehicular misbehavior, especially when it endangers the public.

Click HERE or on the image below to read more…

Leave a Comment » | California, Legislation, United States | Tagged: california, legislation, united states | Permalink
Posted by stronwi

New Mouse Models of SMA Developed Using Mouse Smn Genes that Mimic Human SMN2

February 2, 2011

New Mouse Models of SMA Developed Using Mouse Smn Genes that Mimic Human SMN2

FSMA (Press Release) | January 31, 2011

Dr. Christine DiDonato and colleagues at Children’s Memorial Research Center in Chicago, IL and Ottawa Health Research Institute in Ottawa, ON recently published 2 new mouse models of SMA in the Journal PLoS One with funding from Families of SMA.

Click HERE or on the image below to read more…

Leave a Comment » | FSMA, Press Release, Research, Uncategorized, United States | Tagged: FSMA, press release, research, united states | Permalink
Posted by stronwi

No sugar-coating for disability exhibit

January 31, 2011

No sugar-coating for disability exhibit

The Vancouver Sun | January 31, 2011 | By Kevin Griffin

VANCOUVER — For disability rights activist Catherine Frazee, the personal overlaps with the political even when she doesn’t intend it.

That happened with Frazee’s recent journey to Vancouver from Toronto for Out From Under, a unique exhibition on the social history of disability in Canada.

As one of its three curators, she felt it was important to be here for the exhibition’s opening during the Paralympic Winter Games.

Frazee, the director of Ryerson’s Institute for Disability Studies, can’t fly for medical reasons having to do with living with spinal muscular atrophy, a genetic neuromuscular disease characterized by the degeneration of the motor neurons. When she travels, she is accompanied by an attendant and Patricia Seeley, her life partner.

The only option for her was to take the train.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Canada, Inspiration | Tagged: advocacy, canada, inspiration | Permalink
Posted by stronwi

Family turns grief into a gift for toddler

January 28, 2011

Family turns grief into a gift for toddler

Global | January 28, 2011 | By Linda Hoang

Click HERE for the video.

When Kaitlyn Harapchuk was three months old, she was diagnosed with spinal muscular atrophy, a disease that affects muscle movement.

Doctors told Kaitlyn’s mother Hali that she probably wouldn’t live to be a year old. But Hali wouldn’t accept it.

“There’s always miracles,” she said.

Hali found special doctors and support groups that could help her daughter live well past the one year benchmark she had originally been given.

Click HERE or on the image below to read more…

Leave a Comment » | Canada, Equipment, Inspiration, Speech Therapy, Technology, Tribute | Tagged: canada, equipment, inspiration, speech therapy, technology, tribute | Permalink
Posted by stronwi

Local Artist Overcomes Tragedy To Memorialize Children

January 27, 2011

Local Artist Overcomes Tragedy To Memorialize Children

NBC4i.com | January 27, 2011 | By Cabot Rea

Vodpod videos no longer available.

CENTRAL OHIO — At 9 months of old, a high fever and strange bruising sent Samantha Bennett to the hospital.

With no answers, she was transferred to a pediatric hospital where the delayed diagnosis of bacterial meningitis proved devastating.

Bennett lost parts of all her fingers, half of one foot and that was not all.

“I am covered in skin grafts. My nose was almost gone, but I’m so grateful they saved my life,” she said.

Bennett underwent surgery after surgery, spending up to six months in the hospital at a time.

It was during that time, with nothing else to do, that she developed the love of drawing.

Click HERE or on the image below to read more…

Leave a Comment » | Inspiration, Ohio, Tribute, United States | Tagged: inspiration, ohio, tribute, united states | Permalink
Posted by stronwi

New playground design adds ‘sensory garden’

January 27, 2011

New playground design adds ‘sensory garden’

The Orange County Register | January 27, 2011 | By Fred Swegles

Supporters of Courtney’s SandCastle, a universally accessible playground to be built in San Clemente, are looking for financial help to get it completed this year – not just the first phase.

Fundraisers Mina Santoro and Don Glasgow unveiled a redesign Wednesday to add a “sensory garden” to the playground, which the City Council agreed to fund last May as part of a 45-acre sports park now under construction along Avenida Vista Hermosa. The council deferred Phase 2 until later.

In its current design, Phase 2 would cost $286,000, Glasgow said. On Wednesday, the San Clemente Rotary Club gave $6,000.

Glasgow said his group has more than $80,000 in bank deposits and receivables, with more pledges in process. “We would like to fully fund the total amount,” he said. “But realistically, we will need help from the city, too.”

The playground is named for Courtney Faye Smith, a San Clemente girl confined to a wheelchair with spinal muscular atrophy. In 2001, when she was 4, adults in her life began searching south Orange County for a place to build a playground where Courtney could play with children with and without disabilities.

Click HERE or on the image below to read more…

2 Comments | California, Fundraiser, United States | Tagged: california, fundraiser, united states | Permalink
Posted by stronwi

Couple designs apartments for the disabled

January 26, 2011

Couple designs apartments for the disabled

The Miami Herald | January 26, 2011 | By Laura Isensee

In his Quickie P200 electronic wheelchair, Pedro Rodriguez recently whizzed along East Third Street in Hialeah. Just ahead, his wife Angie rolled along in her 1113 Jazzie.

They quickly reached their destination: a complex with 18 wheelchair-friendly apartments with roll-in showers, specially designed kitchens and extra-wide hallways.

The couple has made it their life’s work to assist others with physical disabilities through their 25-year-old nonprofit. The new complex is their latest effort.

In February, their nonprofit, Spinal Cord Living-Assistance Development Inc., will debut the building, called SCLAD Plaza, at 201 E. Second St. It will offer housing that is both affordable and accessible to low-income, disabled residents.

“We want people with disabilities to live in their own communities,” explained Angie Rodriguez, 58. “Accessibility in the home — we consider that to be No. 1. If you can’t get into your bathroom, if you can’t move around in your kitchen, you are tied. You don’t have freedom.”

Apartments like the ones at SCLAD Plaza are precious.

Click HERE or on the image below to read more…

Leave a Comment » | Florida, United States | Tagged: florida, united states | Permalink
Posted by stronwi

Odds were against Nora Gooden turning two

January 25, 2011

Odds were against Nora Gooden turning two

WVLT | January 25, 2011

East Knoxville, Tenn (WVLT) — Most parents will tell you that first birthdays, becoming a teenager at age 13, and then turning 18, a young adult, are major milestones to celebrate.

But for one East Knoxville family, seeing their daughter turn two is huge, and encouraging news.

Nora Gooden’s second birthday celebration is one her family will always cherish.

Her mother, Jaime Gooden says, “90 percent of SMA kids don’t make it to two 2, so we have now entered that elite category of children of ten percent who make it past the two mark. So it is a huge milestone for us.”

Nora’s favorite celebrity, Mini Mouse even made a surprise appearance at her party on Sunday.

Mom says, “Nora just lit up. It was priceless.”

Click HERE or on the image below to read more…

Leave a Comment » | Awareness, Tennessee, United States | Tagged: awareness, tennessee, united states | Permalink
Posted by stronwi

John Bell and Patterson Hood Share Stage at Hannah’s Buddies Benefit

January 24, 2011

John Bell and Patterson Hood Share Stage at Hannah’s Buddies Benefit

Jambands.com | January 24, 2011

The 12th Annual Hannah’s Buddies benefit, which raises money for spinal muscular atrophy research, took place over the weekend at the Grand Cypress Golf Club and The House of Blues in Orlando, FL. Saturday saw the event’s host John Bell introduce Hannah for whom the event is named, before performing a set that focused on material from the Widespread Panic catalog, such as “Let’s Get the Show On the Road,” “Mercy,” and “Dirty Side Down.” Towards the end of the set, Bell brought out Buck Williams, Widespread Panic’s longtime booking agent and co-manager, who added harmonica to Neil Young’s “From Hank to Hendrix.” Bell’s set concluded with the Drive-By Truckers’ Patterson Hood joining in for “Smokestack Lightning” and “End of the Show.” Bell also appeared with Hood’s group on a version of Alice Cooper’s “I’m Eighteen.”

Leave a Comment » | Florida, Fundraiser, Hannah's Buddies, United States | Tagged: florida, fundraiser, Hannah's Buddies, united states | Permalink
Posted by stronwi

Not just a level playing field

January 24, 2011

Not just a level playing field

ABC.net.au | January 24, 2011 | By Tristram Peters

As any of my friends would tell you, I’m addicted to sports. From the spectacle that is the All Blacks performing the haka – a sight I admire even as an ardent Wallabies supporter – to the fervour that erupts each time the Football World Cup comes around, I love it all. Well, except for golf, but that’s beside the point.

It started at a young age with me. I’m told by my dad that I watched the ’91 Rugby World Cup with him when I was one year old. I may have been more interested in sleeping and eating at the time, but I figure that’s where it all began. At a very young age, I had decided that I wanted to play sport for a career – be it rugby union, league, AFL, or football.

But my dreams were dashed by a form of muscular dystrophy; a wonderfully titled condition called Spinal Muscular Atrophy Type 2. Essentially, my muscles were slowly becoming weaker, so weak that I was soon confined to an electric wheelchair.

Click HERE or on the image below to read more…