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Archive for February 2008

FighterMom Friday

Posted: February 25th, 2008 | By: Staff | No Comments
Monday, February 25th, 2008

You’re going to be hearing a lot about FighterMom Friday in the coming month or so. The event, which will be held on the Friday before Mother’s Day (May 9) at the New York Palace Hotel in Manhattan, will be a gathering of moms who are fighting against diseases or conditions affecting their children. The day will be full of speakers, conferences, and seminars, all focused on helping FighterMoms with their fight. The keynote speaker, we’re excited to announce, will be Katherine Crier. You know her from watching her on Court TV, CNN, Fox NewsChannel, and ABC. More will be announced in the coming weeks!

You can view the FighterMom Friday invitation here.

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Categories : FighterMom Disease Advocacy News, Spinal Muscular Atrophy Events

Rolling with Laughter in London

Posted: February 14th, 2008 | By: Staff | No Comments
Thursday, February 14th, 2008

Credit: Rollingwithlaughter.comNatasha Wood’s one woman tour is rolling toward its completion. You may recall Natasha as the guest on the first episode of Fighting Back Podcast. Back then Natasha was launching the tour of her autobiographical one-woman show, Rolling with Laughter, with a series of dates in North Hollywood, California. Natasha has Spinal Muscular Atrophy Type II and uses the show to tell about her remarkable life. Almost a year later, the tour’s final destination is in view — a single show in London, to benefit SMA research. The proceeds from the show will go to the Jennifer Trust, a UK nonprofit.

The performance will be on March 30 at Her Majesty’s Theater in Haymarket, London. For more on Natasha and for ticket information, please visit RollingWithLaughter.com.

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Categories : Spinal Muscular Atrophy Families and Friends

“Fat Man” Leads Walk for Spinal Muscular Atrophy

Posted: February 9th, 2008 | By: Staff | No Comments
Saturday, February 9th, 2008

A self-described “fully-fledged fat man” is, as this blog post is being written, leading a team that’s walking through the UK for SMA.  Gav Thompson of Abingdon, England, is leading a 17-strong team that’s walking a 52-mile tour of of Berkhire and Oxfordshire.

More details from the BBC:

The Abingdon man dreamt up the walking challenge after his best friends’ five-month old daughter Georgia died from the terminal disease Spinal Muscular Atrophy Type 1 (SMA).

The baby girl from Newbury died on Sunday 6 January 2008 after a three-month fight to stay alive.

Gav said: “There is little awareness of SMA in the UK, despite it being the largest genetic killer of babies and toddlers in the UK.”

This spurred Gav into action.

He plumped for a walk to raise awareness and funds for The Jennifer Trust for Spinal Muscular Atrophy and the Naomi House Children’s Hospice, where baby Georgia passed away.

Gav teamed up with his similarly “generously-proportioned” friend, Matt Whitticase, and the two hauled themselves off the couch and have been training furiously since October.

“We weren’t sure how far we could or should walk,” said Gav, “so to start with we both got on the bathroom scales, only to find that our combined weight was literally ‘off’ the scale.

He added: “Consequently we figured we should walk as many miles as our combined weight – and that gave us the 52 mile target.”

The other walkers are all friends and family of Georgia’s parents, Nick and Emma Macpherson from Newbury, who are also doing the walk.

The 17 walkers have so far raised over £72,000 in sponsorship from friends and colleagues.

The group started its walk on Thursday, February 7.  They’re due to finish tomorrow.

To read the entire BBC article, click here.  To visit the website built about the walk, click here.

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