Raising funds for all-terrain wheels

May 27, 2011

Raising funds for all-terrain wheels

Mercury Daily | May 27, 2011 | By Grier Williamson

COURTNEY Haddrick, 17, is on a mission to make Tyson Jensen’s dream a reality.

Tyson, 25, is confined to an electric wheelchair.

“He has a degenerative disease called spinal muscular atrophy (SMA) which affects his muscles, making them weaker as he gets older,” Miss Haddrick said.

Mr Jensen visits the Mackay Engendi Disability Respite and Activity Centre and his dream is to own an ATV (all terrain vehicle) wheelchair that will enable him to do the things he enjoys, such as going to the beach, fishing and his favourite hobby of pig hunting.

She is independently raising funds through her own initiative. “I have a made a tip jar with a sign that tells people what the money goes towards. I have it at my workplace at Black’s Beach Seafood,” she said. “I have been fundraising for three weeks with the tip jar and so far I have raised about $300,” she said.

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Posted by stronwi

‘Prisoners’ raise funds for MDA

May 26, 2011

‘Prisoners’ raise funds for MDA

BGDailyNews.com | May 26, 2011 | By Pam Cassady

About 200 people were arrested and taken to jail in Bowling Green on Wednesday, but all were back on the streets by late afternoon. The arrestees were even treated to a meal and thanked for their visit during their incarceration.

Of course, this wasn’t an ordinary jail and the prisoners were far from criminals. Instead, area business and community leaders willing to help out a good cause went behind bars Wednesday to benefit the Muscular Dystrophy Association.

During the MDA lockup, the “jailbirds” were arrested and brought to the L&N Depot, where they were booked and “sentenced to raising money,” said Amanda Spiehler, executive director MDA of Middle Tennessee and Southern Kentucky.

“I’m being falsely accused,” joked Robert Dean, chief of police at Western Kentucky University, as he sat with other arrestees making calls to get donations. Dean then admitted that he knew he was going to be arrested that day.

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Posted by stronwi

Cutting-Edge Research Saves Local Boy’s Life

May 24, 2011

Cutting-Edge Research Saves Local Boy’s Life

Danville Patch | May 22, 2011 | By Sarah Frank

In August, Danny McHale will turn 11, a milestone most doctors never thought he’d reach.

When Danny was just 5 ½ months old, his parents knew something was wrong. Danny wasn’t sitting up like other babies, and when he was put into a sitting position, he would flop right over.

Danny’s parents, Mary and Joe, took him to a neurologist, and after five minutes were told that he had Spinal Muscular Atrophy (SMA), Stage II, and to take him home and enjoy him while they could. They were told Danny was what doctors termed a “weak type II” because he did eventually sit with assistance as a baby.

They got the devastating news no parents want to hear—it was terminal. They were told their Danny had three to six months to live, and they should make sure to get him baptized.

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Crunch Time for Paralysis Cure!

May 23, 2011

Crunch Time for Paralysis Cure!

Daily Kos | March 23, 2011 | By Don C. Reed

If you would like California to support research to cure paralysis, today is the day to be heard.

If you support research to cure paralysis, there are some California legislative Aides who need to hear from you!

It does not matter where you live. The importance is that they hear from you.

Write to the aide—the member’s name follows. Remember, just a sentence or two is all that is needed! If you want ideas, take a look at the latest I put together, at the bottom. If you only have time to do one, make it the top, aide for the chairman, Felipe Fuentes, and the vice-chair, Diane Harkey.

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Annual event brings rodeo to local special needs students

May 23, 2011

Annual event brings rodeo to local special needs students

The News Courier | May 21, 2011 | By Lora Scripps

As the dust settled on the Limestone County Sheriff’s Arena Friday all that could be seen or heard were the memories of smiling faces and the residual sounds of laughter and cheer. It was the close of what could only be called a “fun-filled day” by those in attendance and meant the Ninth Annual Exceptional Rodeo had taken place. All held at a location where a number of exceptional cowgirls and cowboys were offered the ride of a lifetime.

“It’s my first time on a horse,” said Rhonda Holt at lunch on Friday after taking a ride around the arena. “I like it.” Holt said her favorite part of the event had to be the horses. “Yee haw,” she giggled.

The Exceptional Rodeo drew hundreds of special needs children and adults to the arena on Alabama 99. Some hopped on horses for the ride of their lives, while others tossed ropes around the necks of man-made steers. The rodeo had everything from a man-made bucking-bull ride to tractor and mule-drawn buggy rides to a petting zoo harboring llamas, goats, ponies and rabbits.

“This is my first year,” said Logan Byrd of Athens, adding his favorite part of the event is riding the horses as well. “Today was actually a surprise.”

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Batten disease parents aim at screening

May 23, 2011

Batten disease parents aim at screening

San Francisco Business Times | May 20, 2011 | By Ron Leuty

Trying to find patients for clinical trials of rare disease treatments can be tough. But following StemCells Inc.’s abrupt shelving of an early-stage trial in Batten disease, patient advocates and parents of kids afflicted with deadly malady are charged up to ensure it isn’t so difficult anymore.

It’s a backstory that runs from Palo Alto to Jacksonville, Fla. — catching Vacaville, San Diego, Columbus, Ohio, Austin, Texas, Kansas City, Mo., Houston and Santa Fe, N.M., in between — and it says a lot about the power of individuals to make a difference.

The story didn’t begin with Palo Alto-based StemCells’ (NASDAQ: STEM) difficulty finding the right Batten disease patients for its trial, as I report in this week’s print edition. For years, patient advocates have been trying to get better screening of Batten disease carriers, so it reduces the risk of more children being born with the brain-wasting disease. Parents now can spend months, if not years, trying to get a correct diagnosis, allowing the disease to kill more neurons and making it less likely that companies will be able to generate the data they need to get therapies approved.

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Families of Spinal Muscular Atrophy Announces Repligen Corporation Receives FDA Approval to Begin Phase I Safety Study

May 23, 2011

Families of Spinal Muscular Atrophy Announces Repligen Corporation Receives FDA Approval to Begin Phase I Safety Study

Press Release | May 19, 2011

Families of Spinal Muscular Atrophy announced today that Repligen Corporation has received approval from the U.S. Food and Drug Administration to commence a Phase I safety study in healthy volunteers for RG3039, formerly called Quinazoline495, which is being developed for Spinal Muscular Atrophy.

FSMA began the Quinazoline program in 2000 at the very initial stages of drug development, when risk is the highest. It was the very first industrial drug program for SMA ever conducted. FSMA fully funded the program with investments of $13 Million. The direction from FSMA provided the positive results necessary to license the program to Repligen Corporation and leverage larger funding for clinical development.

This clinical trial will be a double-blind, single ascending dose, Phase I study in healthy, adult volunteers to evaluate the pharmacokinetic and safety profile of RG3039 in up to 40 subjects. The study will be the first step in the clinical development of RG3039 as a potential treatment for SMA.

“It is very exciting after 10 years of hard work by FSMA leading this program, including a significant financial investment, for the drug candidate to be licensed to Repligen in 2009 and to now be able to announce the approval to advance into human clinical trials. This is a tremendous milestone for our community to have reached as we make progress toward a treatment for SMA,” stated Jill Jarecki, Ph.D. Research Director at FSMA. “We are very pleased to have received approval to initiate human clinical trials with RG3039,” stated Walter C. Herlihy, President and Chief Executive Officer of Repligen Corporation.

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Our Heroes: Determined Tilly is a charity champion

May 23, 2011

Our Heroes: Determined Tilly is a charity champion

thisisStaffordshire.co.uk | May 23, 2011 | By Alex Campbell

BRAVE Tilly Griffiths depends on a hi-tech wheelchair to perform the basic functions most children take for granted.

But lack of mobility has proved no barrier for the 11-year-old – she has now helped to raise £2 million for charities and good causes.

Tilly, of Cheddleton, suffers with spinal muscular atrophy, a muscle-wasting condition which causes progressive weakness and loss of movement.

Her fund-raising efforts have helped the family pay back – with interest – the charities which have supported them throughout.

This month Tilly joined John Caudwell, founder of the Caudwell Children charity, on stage at the organisation’s Butterfly Banquet.

Her poignant testimony about the value of her motorised wheelchair, bought for her by the charity, sparked a surge in donations which topped £500,000.

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Benefit concert for spinal muscular atrophy Saturday

May 23, 2011

Benefit concert for spinal muscular atrophy Saturday

MercuryNews.com | May 18, 2011 | By Eric Louie

DANVILLE — Danny McHale was 6 months old when doctors diagnosed him with spinal muscular atrophy. His parents were told he probably wouldn’t live to his first birthday.

A decade later, the Danville boy is now a fifth-grader at Green Valley Elementary School. Among other interests, Danny is proud of the reigning champion San Francisco Giants and excited over the San Jose Sharks’ playoff run.

His parents and other families dealing with the disease, who on Saturday are holding their 11th annual fundraiser in hopes of finding a cure, said it’s because of children like Danny that they continue their efforts.

“If we stopped, they would think we’ve given up,” said his mom, Mary. “If you stop, the kids think there’s no hope.”

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Posted by stronwi

James Frey opens up to Oprah about the loss of his son

May 23, 2011

James Frey opens up to Oprah about the loss of his son

MedPageToday.com | May 19, 2011 | By Michelle R. Berman, MD

Earlier this week, Oprah aired the second part of her interview with author James Frey. As some may recall, Frey came to his celebrity when he published a best-selling book, A Million Little Pieces, which was presented as a memoir of his experiences during his treatment for alcohol and drug addiction at a rehabilitation center in Minnesota. The book came to the attention of Oprah Winfrey, who was so impressed by it that she made it one of her Oprah Book Club selections, causing sales to skyrocket even further. However, it was later revealed that Frey fabricated large parts of his memoirs, including details about his criminal record. Oprah invited Frey back on her show for what turned out to be a confrontation about his deceptions. As part of her final season, Oprah once again sat down with Frey to discuss the whole controversy and how they have finally made peace with each other.

One of the most poignant parts of the two-day series was when Frey opened up to Oprah about the death of his son, Leo, at eleven days of age. Leo died of a neuromuscular disease called Spinal Muscular Atrophy (SMA). SMA is a disease where the nerve cells that control motor neurons are damaged. SMA belongs to a group of genetic diseases that cause weakness and wasting of the voluntary muscles in the arms and legs of infants and children. The disorders are caused by an abnormal or missing gene known as the survival motor neuron gene (SMN1), found on chromosome 5, which is responsible for the production of a protein (called SMN protein) essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and die.

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