Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick

May 2, 2011

Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick

Huffington Post | May 2, 2011 | By Don C. Reed

“He is right here,” said Pranav’s mother, in her lilting Indian accent; “would you like to speak to him?”

For a moment I was actually afraid; I don’t know why.

Pranav had Spinal Muscular Atrophy (SMA) a disease like a slow spinal cord injury. Like the paralysis which afflicts my son Roman Reed, SMA is not “catching”, and in any case we were on the telephone.

“Hello,” said a surprisingly deep voice, very dignified. I had a sudden thought — he sounded like a politician, a good one, somebody who would use the power of government to help people.

We talked about Disneyland and Elmo, both of which he strongly approved.

But the conversation was tiring for him, and we soon said goodbye.

He was three years old.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Awareness, California, Gwendolyn Strong Foundation, Legislation, Research, Tribute, United States | Tagged: , , , , , , , | Permalink
Posted by stronwi

To “Walk a Mile” in Her Wheelchair

April 30, 2011

To “Walk a Mile” in Her Wheelchair

KTVA (CBS) | April 29, 2011 | By Grace Jang

Vodpod videos no longer available.

Thousands of children in the United States suffer from muscular dystrophy and the experience can sometimes alienate them from their peers.

However, one Anchorage school set about trying to bridge that gap with a unique project.

Fitting in is one of the most important things for a sixth grader but it can be hard when you’re a sixth grader who gets around in a wheelchair.

When Krista Stapleford was three years old she was diagnosed with spinal muscular atrophy, which impacts her ability to use all of the muscles in her body, particularly her legs.

So in order to get around, 12-year-old Krista relies on a wheelchair, but that means she stands out and not necessarily in a good way.

Click HERE or on the image below to read more…

Leave a Comment » | Alaska, Education, Inspiration, MDA, United States | Tagged: , , , , | Permalink
Posted by stronwi

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.”

Click HERE or on the image below to read more…

Leave a Comment » | Education, FightSMA, Research, United States, Virginia | Tagged: , , , , | Permalink
Posted by stronwi

PokerNews Interview: Josh Cranfill

April 29, 2011

PokerNews Interview: Josh Cranfill

PokerNews.com | April 29, 2011 | By Rich Ryan

At 14 months old, Josh Cranfill was diagnosed with Werdnig-Hoffman Disease – a form of Spinal Muscular Atrophy. It is a degenerative muscle disease that weakens the muscles in the body until they eventual die out. Poker is unquestionably Cranfill’s favorite hobby, but since the United States Department of Justice shut down online poker in the United States, it’s become extremely difficult for him to play.

Cranfill is confined to an electric wheelchair, limiting his mobility, and lives in Burlington, North Carolina, which is a long way from any brick-and-mortar casino. He can play in home games, but the houses or buildings must be handicap accessible and he needs an assistant to get him there and help him play.

We were fortunate enough to catch up with Cranfill and talk to him about the current state of online poker and how it effects the handicapped community.

Click HERE or on the image below to read more…

Leave a Comment » | North Carolina, sports, Technology, United States | Tagged: , , , | Permalink
Posted by stronwi

FightSMA Celebrates 20 Years Fighting Spinal Muscular Atrophy; Gears Up for Annual Conference in DC

April 29, 2011

FightSMA Celebrates 20 Years Fighting Spinal Muscular Atrophy; Gears Up for Annual Conference in DC

PR Newswire | April 28, 2011

FightSMA will be welcoming elite researchers and scientific professionals, as well as families and friends in the SMA community, to the L’Enfant Plaza Hotel May 3-6, 2011 in Washington, D.C. The group, which was founded in 1991, is celebrating its 20th anniversary this year. To date, FightSMA has raised more than $7 million for SMA research and boasts 19 chapters in the U.S. and Canada.

The centerpiece of the Conference will be the Thriving with SMA: LIVE! panel discussions on Thursday, May 5, a unique, one-of-a-kind series of presentations from influential leaders in the fields of pulmonology, orthopedics, nutrition, neurology and clinical trial. In addition, FightSMA will be offering free and unlimited access to the Thriving with SMA panel 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.

Click HERE or on the image below to read more…

Leave a Comment » | FightSMA, Press Release, United States, Virginia | Tagged: , , , | Permalink
Posted by stronwi

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.

Click HERE or on the image below to read more…

Leave a Comment » | Education, Inspiration, United States, Washington | Tagged: , , , | Permalink
Posted by stronwi

Black Friday fallout hurting players

April 29, 2011

Black Friday fallout hurting players

ESPN | April 27, 2011 | By Gary Wise

I wouldn’t be shocked if I crashed mail servers last week after I tweeted that I wanted poker players whose futures were affected by “Black Friday” to email their stories to my account. Hundreds answered the call, sharing at length the dire circumstances they face in the wake of the U.S. Department of Justice’s actions against poker industry entities and the subsequent departure of those entities from America’s digital space. People are hurting. A lot.

“You have these tens of thousands of U.S. players and millions of casual players who want to play on occasion and these people have money tied up and are suffering more than [PokerStars, Full Tilt Poker and Ultimate Bet] ever will,” said Michael D, one of the affected. “I don’t know the reasons behind the DOJ’s actions, but it seems like there might be broader ramifications than they considered. They didn’t have the foresight to see how people would be impacted by what they did.”

While the DOJ can’t be faulted for the enforcement on the alleged crimes, many U.S. citizens are now feeling they were lulled into a false sense of security, investing or leaving large sums online because for more than four years, enforcement of the Unlawful Internet Gambling Enforcement Act was minimal. Those sums are now mostly frozen online (PokerStars announced Wednesday they are ready to return player funds), but many have legitimate concerns regarding whether everything will be returned. For some, patience isn’t an affordable luxury.

Click HERE or on the image below to read more…

Leave a Comment » | United States | Tagged: | Permalink
Posted by stronwi

Whitfield honored for service

April 29, 2011

Whitfield honored for service

ThisWeekNews.com | April 27, 2011 | By Jennifer Nesbitt

For the last eight years, Westerville resident Nila Whitfield has helped make the wishes of more than 40 children come true.

As a result, the Make-A-Wish volunteer and fundraiser has been named an “outstanding volunteer” by the foundation’s Ohio, Kentucky and Indiana Region.

Whitfield said she first volunteered for Make-A-Wish after a friend’s child had a wish granted. That friend began volunteering and encouraged Whitfield to do the same.

“When I got ready to retire from Ohio State, she said, ‘Nila, this would be perfect for you,'” Whitfield said.

Whitfield said the families she meets are what make volunteering for Make-A-Wish great.

Click HERE or on the image below to read more…

Leave a Comment » | Inspiration, Ohio, United States, Wish | Tagged: , , , | Permalink
Posted by stronwi

Fund-raising event aimed to help pioneering research into illness

April 27, 2011

Fund-raising event aimed to help pioneering research into illness

The Star | April 27, 2011

A DOTING dad whose son has a muscle-wasting disease for which there is no effective treatment or cure is raising cash for pioneering research at a world class institute in Sheffield.

Mohammed Amin’s son Saeed was diagnosed with spinal muscular atrophy or SMA when he was two.

Tthe degenerative neurological condition prevents nerve cells in the spinal cord functioning properly, causing muscles to weaken and eventually stop working.

The prognosis for patients with the disease – similar to motor neurone disease in adults – is not good, with some given a life expectancy of only two years.

But 14-year-old Saeed has battled bravely through the condition – resorting to a wheelchair full-time only three years ago.

Click HERE or on the image below to read more…

Leave a Comment » | Fundraiser, Inspiration, United Kingdom | Tagged: , , | Permalink
Posted by stronwi

Bristol mum raises £11,000 for charities in memory of her son

April 23, 2011

Bristol mum raises £11,000 for charities in memory of her son

Evening Post | April 23, 2011

A MUM raised £11,000 through a ball in memory of her son who died a year ago.

Mary Abrahams felt the star-themed ball would be the perfect way to mark a year since the death of 14-year-old Ryan.

And she managed to raise a total of £11,000, which was split between two charities that supported the family – the Jessie May Trust and Children’s Hospice South West.

The Bradley Stoke teenager was born with brittle bones and spinal muscular atrophy, but never let his disabilities get in the way of doing what he wanted to.

The former Evening Post Gold Star winner played wheelchair football for Aston Villa’s team and also played table-top cricket.

The ball at Ashton Court Mansion was held two days after the anniversary of Ryan’s death and his mother found organising the event helped occupy her during a difficult time.

Click HERE or on the image below to read more…

Leave a Comment » | Fundraiser, Tribute, United Kingdom | Tagged: , , | Permalink
Posted by stronwi

« Previous Entries
Next Entries »