A surprise and chance of independence for wheelchair-bound Wareham woman

July 10, 2011

A surprise and chance of independence for wheelchair-bound Wareham woman

SouthCoastTODAY.com | July 10, 2011 | By Brian Fraga

WAREHAM — DaLiza Cardoza thought she was just going to be named an assistant basketball coach.

But when the 18-year-old arrived Saturday at the Wareham Youth Athletic League’s sun-baked courts, she found Patrick Brent standing in front of a 2008 Honda Element, waving a set of keys.

“This is your car,” said Brent, a marketing director for Freedom Motors, a Michigan company that converts vehicles to wheelchair accessibility.

For Cardoza, a recent graduate of Wareham High School who was diagnosed at age 2 with spinal muscular atrophy, the surprise vehicle meant a chance at an independent life as she prepares to attend college this fall.

“I can’t even explain how I feel,” said Cardoza, as she was surrounded by a crowd of beaming friends and relatives.

“It’s a blessing.”

Click HERE or on the image below to read more…

Leave a Comment » | Adapted Equipment, Equipment, Massachusetts, United States | Tagged: , , , | Permalink
Posted by stronwi

Drugs trial hope for brave Ruby

July 10, 2011

Drugs trial hope for brave Ruby

Worcester News | July 9, 2011 | By Richard Vernalls

A BRAVE young girl battling a rare genetic condition has started a cutting-edge medical trial which could offer hope of a brighter future to thousands of sufferers around the world.

Five-year-old Ruby Crowther has had more hurdles than most youngsters of her age to overcome.

The bright little girl, who goes to Rushwick CE Primary School, Worcester, has a degenerative nerve condition called type-2 spinal muscular atrophy (SMA), which causes the nerves sending messages to her muscles to die off.

We previously reported how Ruby needs a specially adapted wheelchair because she cannot walk and has limited use of her arms.

However, doctors have put her on a new trial involving a new drug called Olesoxime which is supposed to regenerate the nerves damaged by her condition.

She is one of only a handful of UK patients on the year-long trial. There are regular medical checks at Birmingham’s Heartlands Hospital where precise measurements are taken, to guage progress.

Click HERE or on the image below to read more…

1 Comment | Clinical Trial, Research, United Kingdom | Tagged: , , | Permalink
Posted by stronwi

Passion for gardening turns into growing business

July 7, 2011

Passion for gardening turns into growing business

Cedar Valley Business Monthly | July 6, 2011 | By Dave Rasdal

INDEPENDENCE, Iowa— Josh Spece pushes a little joystick forward and happily zips along a gravel path among hundreds of varieties of hostas surrounding his home. He doesn’t allow his wheelchair to block his dreams.

Spece, 31, couldn’t walk as a baby and was diagnosed with spinal muscular atrophy. He grew up playing in the garden, graduated from high school in Independence and earned a horticulture degree from Hawkeye Community College. In 1998 on his parents’ farm, Spece opened a garden and gifts store, In the Country.

“Plants have just always been something I’ve been interested in. Even when I was little we had a vegetable garden and I was always out there with Mom.”

Click HERE or on the image below to read more…

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Posted by stronwi

Alumna Fights SMA One Step at a Time

July 7, 2011

Alumna Fights SMA One Step at a Time

Manhattan College | Spring 2011 Magazine

MANY PEOPLE RUN to stay in shape and achieve a personal best time, but Lauren Lundy O’Connor ’02 is running for a cause. Since 2008, O’Connor and her SMA (spinal muscular atrophy) Asics have been hitting the pavement to raise funds to support the research of SMA and to find a cure.

SMA is the No. 1 genetic killer of infants and young children and results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. When O’Connor’s nephew Owen was diagnosed with SMA in 2008 at just two months and passed away three months later, she was motivated to start running for a cause, and founded teamrun4owen.com, a website that features information about SMA, Owen’s story, details on upcoming races, donation opportunities and more.

In October 2008, O’Connor ran the Dublin marathon and raised $6,000 for SMA, and all of the proceeds were donated to Columbia University’s Spinal Muscular Atrophy Clinical Research Center. Two years later, Michael Van De Loo ’94 connected with O’Connor through her website after he found out his daughter Ciara had SMA.

Click HERE or on the image below to read more on page 53 of the Manhattan College spring 2011 magazine…

Leave a Comment » | Awareness, Fundraiser, Gwendolyn Strong Foundation, Inspiration, New York, United States | Tagged: , , , , | Permalink
Posted by stronwi

Miley Cyrus meets a fan and gets a tan in Adelaide

July 6, 2011

Miley Cyrus meets a fan and gets a tan in Adelaide

AdelaideNow | July 2, 2011 | By Matt Gilbertson

MILEY Cyrus caught up with one of her number one fans before her rather raunchy show at Adelaide Entertainment Centre this week.

Sixteen-year-old Tina May, who suffers from spinal muscular atrophy, has been a patient in the Women’s and Children’s Hospital for 12 months, where her room is plastered with Miley posters and even a fabulous Miley bedspread.

But, needless to say, nothing was going to keep Tina away from Wednesday night’s show.

In the lead-up to what she described as “the single most exciting thing in my life”, Tina checked herself in for a Miley makeover, having her hair and make-up done by City Chic and Iris Boutique.

Click HERE or on the image below to read more…

1 Comment | Australia, Wish | Tagged: , | Permalink
Posted by stronwi

The pep rally of a lifetime

July 6, 2011

The pep rally of a lifetime

ConnectAmarillo | June 29, 2011 | By Matt Hamilton

AMARILLO, TEXAS — Hundreds of people filed into the gymnasium at Amarillo High School Wednesday afternoon, but definitely not to see a game.

No, it was for something much better, they were there to see a little girl realize her dream.

Elvira Caralles is a 10 year old girl whose smile can light up a room, a good quality for any aspiring cheerleader, but unlike most kids her age Elvira has type two spinal muscular atrophy, making that goal much more difficult.

However, thanks to the good heart of a cheerleading coach at West Texas High School, Elvira got to live her dream.

Click HERE or on the image below to read more…

Leave a Comment » | Inspiration, sports, Texas, United States | Tagged: , , , | Permalink
Posted by stronwi

Lucy’s sponsored head shave in daughter’s name

July 6, 2011

Lucy’s sponsored head shave in daughter’s name

Melton Times | June 30, 2011

A BEAUTY therapist has pledged to lose her treasured locks if she raises £1,000 for charity in her baby daughter’s memory.

Lucy Wright (30), of Southwell Close, Melton, is doing her sponsored head shave for the Jennifer Trust for Spinal Muscular Atrophy – the only UK-based charity that helps families cope with living with the disease.

Lucy lost her daughter, Georgia, to the terminal degenerative disorder three years ago.

Since then she has devoted her time and energy towards raising funds for the charity which has helped her family and others as well as raising awareness of the disease.

To date she has raised nearly £4,000 for the charity.

Click HERE or on the image below to read more…

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

Coriell Institute and NIH Provide Scientists with Powerful New Stem Cells

June 27, 2011

Coriell Institute and NIH Provide Scientists with Powerful New Stem Cells

Press Release | June 27, 2011

CAMDEN, N.J. – Coriell Institute for Medical Research announced today the availability of powerful new stem cells to the scientific research community. These cells – called induced pluripotent stem cells – possess many of the important properties of embryonic stem cells. However, they bypass controversy as they can be made from skin cells or blood cells, avoiding the need to involve embryo-derived cells. Induced pluripotent stem (iPS) cells can multiply indefinitely and can become almost any type of cell in the human body. These cell lines, available through the National Institutes of General Medical Sciences (NIGMS) Human Genetic Cell Repository at Coriell, were derived from individuals with Huntington’s disease, juvenile onset diabetes, muscular dystrophy, spinal muscular atrophy, or severe combined immunodeficiency.

The demand in the research community for access to iPS cells is quickly growing. Coriell’s President and CEO, Michael F. Christman, Ph.D., recognizes the importance of incorporating this new technology into Coriell’s repertoire. “The promise of stem cell research lies in its application in understanding the progression of human disease, to better target therapies to optimize our health outcomes, and to ultimately use stem cells therapeutically to cure disease and reverse injury,” says Christman.

Click HERE or on the image below to read more…

Leave a Comment » | New Jersey, Research, United States | Tagged: , , | Permalink
Posted by stronwi

Genetic revolution: Human Genome Project finally offers help against diseases

June 27, 2011

Genetic revolution: Human Genome Project finally offers help against diseases

The Miami Herald | June 24, 2011 | By Fred Tasker

When the long-awaited Human Genome Project succeeded in 2003, mapping all the DNA, genes and chromosomes that operate the human body, it was hailed as a medical miracle, compared in scientific significance to the Apollo moon landings.

But the glow quickly faded. Progress has been slower and setbacks greater than expected, prompting some to say the whole idea is overblown, and research dollars could be better spent on other ways of fighting disease.

That’s about to change.

Researchers in South Florida and across the nation now are working on advances they say could soon create an explosion of new ways to prevent, detect, treat and someday even cure scores of intractable diseases.

Click HERE or on the image below to read more…

2 Comments | Florida, Research, United States | Tagged: , , | Permalink
Posted by stronwi

Brighton mother takes health campaign to Prime Minister

June 24, 2011

Brighton mother takes health campaign to Prime Minister

The Argus | June 24, 2011 | By Siobhan Ryan

The mother of a little boy living with a rare illness has written to Prime Minister David Cameron to protest at proposals to close a children’s heart unit.

Susanna Nicholls says getting rid of the service would cut off a vital lifeline for her five-year-old son Daniel.

Daniel suffers from spinal muscular atrophy which has affected his muscles and left him unable to crawl, walk or even sit up unaided.

He needs a machine at night to help him breathe and has been in and out of hospital all his life.

Daniel, from Patcham, Brighton, has been treated by the specialist respiratory team at the Royal Brompton Hospital in London on many occasions and staff saved his life when one of his lungs partially collapsed.

Mrs Nicholls, 30, says that if the Royal Brompton’s heart unit closes, it will have a knock-on effect on other areas, such as the respiratory unit.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Awareness, Legislation, United Kingdom | Tagged: , , , | Permalink
Posted by stronwi

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