New foundation works to fund playground’s 2nd phase

March 22, 2011

New foundation works to fund playground’s 2nd phase

The Orange County Register | March 21, 2011 | By Fred Swegles

A local foundation is trying to fund Phase 2 of Courtney’s SandCastle, a universally accessible playground that is under first-phase development in a city sports park being built on Avenida Vista Hermosa in San Clemente.

The City Council voted May 18 to build Phase 1, featuring play structures themed as a castle and a sailing ship designed to be accessible for all kids, including those with disabilities. The cost was $658,000.

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Family raising funds to help Maddison’s rare condition

March 21, 2011

Family raising funds to help Maddison’s rare condition

this is nottingham | March 21, 2011 | By Dominic Howell

A MOTHER from East Leake is planning a birthday fun day to raise money for her daughter who is defying all medical expectations.

When doctors diagnosed Maddison Sherwood with a very rare muscular disease, which attacks her ability to breathe, they said she would never sit up unaided – but she has.

They said she would never be able to breathe for more than a minute without the aid of a ventilator – but she’s now managed 30 minutes without its help.

“Doctors just can’t work it out,” said mum Lidia Sherwood, of St Mary’s Crescent.

“She’s doing so well and I’m so proud.”

Maddison was diagnosed with spinal muscular atrophy with respiratory distress (SMARD) when she was born and spent the first 11 months of her life in the Queen’s Medical Centre.

There have only been two other recorded cases of SMARD in England and just 60 worldwide.

Click HERE or on the image below to read more…

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Posted by stronwi

Benefit to aid Omaha girl

March 20, 2011

Benefit to aid Omaha girl

Omaha World-Herald | March 20, 2011 | By Rick Ruggles

Jen Peters has treated babies as a registered nurse for seven years, but she had never heard of the disease with which her baby daughter was diagnosed.

The disease is spinal muscular atrophy, and it is deadly.

A benefit for Ella Peters, who is close to 15 months old, will take place March 27 from noon to 5 p.m. at St. Bernadette Church, 7600 S. 42nd St.

Ella’s muscle weakness caused her mother and physician to wonder if she suffered an underlying problem. Ella’s mother received the results of a blood test on Jan. 3.

Click HERE or on the image below to read more…

7 Comments | Fundraiser, Nebraska, United States | Tagged: , , | Permalink
Posted by stronwi

New Article In Regenerative Medicine Explains the Potential of Stem Cell Therapies for ALS and SMA

March 19, 2011

New Article In Regenerative Medicine Explains the Potential of Stem Cell Therapies for ALS and SMA

FSMA via Regenerative Medicine | March 16, 2011

Authors Eva Feldman, Nicholas Boulis, and colleagues present supporting evidence for the utilization of stem cell technology in the treatment of amyotrophic lateral sclerosis and spinal muscular atrophy in the Journal Regenerative Medicine.  They also discuss the first-in-human Phase I trial currently underway examining the safety and feasibility of intraspinal stem cell injections in amyotrophic lateral sclerosis patients as a foundation for translating stem cell therapies for various neurological diseases.

Click HERE to read the full article via FSMA in Regenerative Medicine…

Click HERE to read more on the FSMA site…

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Wish Comes True for Semmes Girl

March 18, 2011

Wish Comes True for Semmes Girl

WKRG | March 16, 2011 | By Devon Walsh

An eight year old Semmes girl, with a debilitating condition had a dream come true today, thanks to the Magic Moments organization. She now has a new pool in her backyard!

Maddy Martin has wanted a pool for years. She has Spinal Muscular Atrophy, and is confined to a wheelchair. Her condition has worsened to the point she can’t move the majority of the muscles in her body. When asked about whether she is excited about her new pool, she uses her soft voice and raises her eyebrows. “yes, I am,” she says.

The Magic moments organization, which grants wishes to Alabama children, is granting Maddy’s wish. With the help of her father Chris, Maddy will be able to enjoy the water, along with her two little brothers. Chris Martin says the pool will be therapeutic as well. “The pool is the only way she can move, so when she sees herself moving, she gets all excited giggling and stuff. She can’t move anything accept in the water.”

Click HERE or on the image below to read more…

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Enzo Biochem Unit Launches First-to-Market Survival Motor Neuron (SMN) Protein Immunoassay System

March 16, 2011

Enzo Biochem Unit Launches First-to-Market Survival Motor Neuron (SMN) Protein Immunoassay System

Press Release | March 16, 2011

Enzo Biochem, Inc. and the Spinal Muscular Atrophy (SMA) Foundation today announced that Enzo’s wholly owned subsidiary, Enzo Life Sciences Inc., has launched a unique immunoassay (ELISA) system which can be used for the identification and detection of Survival Motor Neuron (SMN) protein. The kit is the result of a collaborative agreement between Enzo and the SMA Foundation.for the development of reagents and assays for SMN protein. The availability of an effective SMN ELISA could further enable and expedite drug discovery, development and therapy for Spinal Muscular Atrophy, the leading genetic cause of mortality in infants and toddlers.

Click HERE or on the image below to read more…

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Posted by stronwi

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.

Click HERE or on the image below to read more…

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Swimming with sharks

March 16, 2011

Swimming with sharks

ABC.net.au | March 15, 2011 | By Nathalie Fernbach / Paula Tapiolas

Seven year old Oonoonba student Byron Holman and his mum Meghan spoke with Paula Tapiolas about the Sharkbait Kids program and how swimming makes Byron feel ‘normal’.”

He feels like a normal little boy in the water.” Says Meghan Holman of her son Byron.

“If he could swim everyday he would, he really enjoys it because it is easy on his muscles”.

Seven year old Byron has a rare condition called Spinal Muscular Atrophy (SMA) and is one of only four people with the disease in north Queensland.

Click HERE or on the image below to read more…

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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.

Click HERE or on the image below to read more…

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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.

Click HERE or on the image below to read more…

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