Maghull six-year-old with strength of newborn baby raising £17,000 to replace broken wheelchair

November 17, 2011

Maghull six-year-old with strength of newborn baby raising £17,000 to replace broken wheelchair

Liverpool Echo | November 17, 2011 | By Liza Williams

A MERSEYSIDE schoolboy with the strength of a newborn baby needs a new wheelchair after the wheels fell off his old one.

Six-year-old Ryan Noble, from Maghull, has spinal muscular atrophy, a degenerative disease.

His family are now trying to raise £17,000 for a specialist chair to help him get about with the help of the Caudwell Children national charity.

The Balder powered wheelchair is not available on the NHS but would transform his life, according to his mum Suzanne.

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Runners raise thousands for those who can’t

November 17, 2011

Santa Barbara News-Press | November 13, 2011 | By Nikki Grey

They say they run so that one day those who can’t, can.

Although it takes strength, endurance, and dedication to run a marathon, runners on Team GSF say their sweat leading up to the Santa Barbara International Marathon was nothing compared to what it takes to provide care for a baby that has spinal muscular atrophy.

Representing Santa Barbara-based The Gwendolyn Strong Foundation, 30 runners raised more than $50,000 to spread awareness about the disease, as well as fund research for a cure.

The nonprofit foundation, which was established in 2009 and has raised nearly $1 million for its cause, is not just any organization working to combat a fatal disease.

Created by two Santa Barbara parents who were devastated when they realized a disease they had never even heard of would likely kill their daughter, the organization has spread its message and influence nationwide.

Bill and Victoria Strong say they are humbled by the efforts of the 30 runners to raise money to combat the disease that afflicts 4-year-old Gwendolyn.

“I think this is so powerful that people who can walk or run use their bodies so someday children who can’t, can too,” said Mr. Strong, a 35-year-old Internet entrepreneur.

According to the foundation’s website, spinal muscular atrophy is the No. 1 genetic killer of babies and young children. SMA is a degenerative illness that eventually hinders an individual’s ability to walk, stand, breathe, eat, and swallow.

Mr. Strong said that because of this disease, his daughter is essentially paralyzed and requires around the clock care to stay alive.

The mind, however, is never affected, said Mr. Strong.

“She’s just like any other kid,” he said. “We just try to give Gwendolyn the experiences of any other child. Although the disease is still terminal, her life is now, so we just try to live it that way and give her as many experiences as possible.”

Mrs. Strong, 34, said giving Gwendolyn the life she and her husband want for their daughter can be challenging, but there are always ways to make it work. An example is when Gwendolyn wanted to climb a tree with her preschool classmates. She was lifted into the tree.

Gwendolyn communicates with others, Mrs. Strong said, using her eyes. For “yes,” she rolls her eyes up, and for “no,” she blinks. When Gwendolyn is really excited, she rolls her eyes very fast, Mrs. Strong said.

Members of Team GSF participated in the marathon, half marathon and relay. They raised money mostly by asking friends, families and businesses to sponsor them for the event.

The third annual Santa Barbara International Marathon was Mr. Strong’s first marathon. He said the inspiration of running a marathon to raise awareness and funding for SMA research stemmed from when his friend Michael Paskin raised money for the foundation by participating in the Ironman triathlon in 2009.

Mr. Paskin said he is inspired by the strength the Strong family demonstrates every day.

“What they’re going through is so incredibly difficult and over the course of (Gwendolyn) suffering from SMA, I think it’s easier for some people to throw in the cards or just cope with the diagnosis,” Mr. Paskin said.” But Bill and Victoria have dedicated themselves to eradicating this disease.

“In light of all these obstacles, they still remain so positive, so motivated, and so inspiring,” he said.

Lauren Lundy O’Connor traveled from New York City to run in the marathon. She became passionate about finding a cure for SMA when her best friend’s son died from the disease a few years ago.

Ms. O’Connor, a second-grade teacher, said she connected with the Strongs on Facebook, became good friends with the family and has raised more than $20,000 for the foundation.

She said she is motivated by Gwendolyn’s strength — at 4 years old, Gwendolyn has already doubled the average life expectancy of a child diagnosed with SMA type I.

“Gwendolyn may be 4 years old, but she is my hero, because she is so strong,” Ms. O’Connor said. “She won’t stop fighting. She fights every day. That little girl has my heart.”

The Strong family has changed her perception of life, she said.

“Bad days aren’t really bad days. Every minute is really a gift and there are no guarantees. The way they give Gwendolyn the world teaches me not to take things for granted and to really appreciate the little things.”

While cheering on her husband and the rest of Team GSF at the marathon Saturday, Mrs. Strong was moved to tears by her team.

“The funny thing is they all want to thank us, but they are making a difference,” she said. “It’s easy to just say, ‘I’m really sorry,’ or ‘Their situation stinks,’ but they’re going to help change it and that’s incredible.”

Mrs. Strong stood with Mr. Paskin’s wife and Ms. O’Connor’s mother on the sidelines holding signs for their loved ones that read, “Team GSF” or “Never Give Up.”

The Strongs say they aim to make running the marathon an annual event for the foundation.

They hope to bring in more runners next year, which their supporters say they will have no problem doing. It seems they all have inspired each other.

“It would take an unbelievable amount of endurance to give Gwendolyn the quality of life they have and I think the group of us understand there’s a similarity there,” Mr. Paskin said.

Ms. O’Connor agrees. She said the Strong family’s dedication keeps her running. “I plan to run as long as I’m alive or until there is a cure for the disease, whichever comes first,” she said.


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Cross Fit raises $2,700 for muscular atrophy kids

November 8, 2011

Cross Fit raises $2,700 for muscular atrophy kids | November 2, 2011 | By Miranda Koerner

More than 80 kids participated in exercises at Comal Cross Fit Sunday to raise donations for the Families of Spinal Muscular Atrophy (FSMA) Kids 4 Kids event.

The event raised $2,700 for the cause.

The fundraiser was organized by Comal Cross Fit’s Gretchen Bonser after her neighbor, Melissa Fruend, approached her about becoming involved with FSMA.

“Our children are so blessed and fortunate to be healthy,” Bonser said. “I thought it was only appropriate for kids to be paying it forward for kids.”

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Thirty Santa Barbara Marathon Runners Raise Over $43,000 for the Gwendolyn Strong Foundation

November 5, 2011

Thirty Santa Barbara Marathon Runners Raise Over $43,000 for the Gwendolyn Strong Foundation

Press Release | November 4, 2011

Online PR News – 03-November-2011 –Thirty Santa Barbara Marathon runners from around the country collectively raised over $43,000 for the Gwendolyn Strong Foundation (GSF), a Santa Barbara-based nonprofit organization dedicated to increasing awareness of Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children, and accelerating research focused on a cure.

The thirty “Team GSF” runners will congregate in Santa Barbara to participate in the Santa Barbara International Marathon on November 12, 2011. Team members hail from California to New York and include GSF co-founder and father to Gwendolyn, Bill Strong, other SMA parents, families, and friends, and individuals moved by GSF’s efforts and the SMA cause. Beyond funding for SMA, Team GSF has also raised much needed awareness of SMA, its shocking statistics, its brutal progression, and its dire prognosis.

“To say we’re humbled by what the thirty inspiring Team GSF Santa Barbara Marathon runners have accomplished would be an enormous understatement,” said Bill Strong, GSF co-founder. “There is something unbelievably powerful about a group of individuals coming together to challenge and push their physical strength to the limits to help conquer a disease that robs children of theirs. We’ve all committed to running because we can and we’re running so one day those with SMA can too.”

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Woodham Mortimer aunt braves bungee jump to help ‘amazing’ Nancie

November 5, 2011

Woodham Mortimer aunt braves bungee jump to help ‘amazing’ Nancie

Maldon Chronicle | October 24, 2011

A DARING aunt who is terrified of heights took to the skies at the weekend to raise money for a specialist bathroom for her disabled niece.

Nancie Seaber suffers from a debilitating condition, called spinal muscular atrophy, which means she has no muscle control and is confined to a wheelchair.

But, in a bid to make two-and-a-half-year-old Nancie’s life a little easier, auntie Kellie Jewell did a bungee jump to raise funds for a wet room she can bathe in.

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Ski-a-thon celebrates Mitchell’s life

October 10, 2011

Ski-a-thon celebrates Mitchell’s life

The Daily Advance | October 8, 2011 | By Toby Tate

EURE — This year’s Haley Mitchell Ski-a-thon for Spinal Muscular Atrophy (SMA) is significant not only in the fact that it’s the last one, but also because it would have been Haley’s 14th birthday.

“It’s tough to be here this year without Haley,” said Valerie Mitchell, Haley’s mother. “Personally I just don’t have it in me to keep doing this big event.”

SMA is a deadly neuromuscular disease that deteriorates the spinal cord cells that control muscular function. Afflicted with SMA since birth, Haley was given only two years to live. She beat the odds, passing away on Oct. 26, 2010, just 2½ weeks after her 13th birthday.

Haley’s father Jeff Mitchell, who was waterskiing at Saturday’s event at Beaver Lake in Gates County, said he was happy with the turnout and the support they have received over the years. To date, the ski-a-thon has raised about $400,000 for Families of SMA, according to Mitchell.

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The Story and Purpose Behind Zane’s Run

September 22, 2011

The Story and Purpose Behind Zane’s Run

Malvern Patch | September 20, 2011 | By Pete Kennedy

Vodpod videos no longer available.

In 2009, Keith and Hillary Schmid lost their 5-month-old daughter, Zane, to type I Spinal Muscular Atrophy, a genetic disease that did not affect Zane’s twin sister Avery.

That year, the Schmids organized Zane’s Run, a 5K held at Sugartown Elementary School. The proceeds of the run helped supply informational packets and car seats to families facing the disease. The third annual Zane’s Run will take place Sept. 25 this year.

View the attached video to learn more about the Schmids’ story.

The Schmids hope to raise awareness and encourage people to be tested for SMA.

“Both parents have to be carriers of the disease to have a child with SMA,” Hillary Schmid said. “[Two carriers] have a 25 percent chance of having a child with SMA, a 50 percent chance of having a child be a carrier, and the other 25 percent chance that the child will be unaffected.”

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Hoskins family continues fight for Zion

September 2, 2011

Hoskins family continues fight for Zion

Banner Graphic | September 1, 2011 | By Lauren Boucher

Chelsea and Paul Hoskins have watched their son, Zion, grow up knowing that he will never be able to walk or stand on his own. In the past year there have been several fundraisers in place to aid them in funding Zion’s medical bills.
The couple is reaching out to the community once again, asking for help as they try to raise money to equip their van so Zion can use a power chair instead of a manual one.

In May 2010 Zion was diagnosed with spinal muscular atrophy or SMA. Zion’s daily life now consists of being hooked up to a vest to help him breathe as well as a cough assisting machine, a suction machine, a pulse oximeter and breathing treatments. Each day Zion starts his half-hour treatments at 8:30 a.m. When speaking of Zion, Chelsea explained, “He will eventually get scoliosis and his back is already starting to curve so it hurts him a lot.”

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Pedal-powered tribute

August 23, 2011

Pedal-powered tribute | August 20, 2011 | By Will Frampton

A WESTBURY couple are holding a fundraising day at Westbury Town Football Club in memory of their baby Maisie, who died last year.

Dad Jim Pickernell, 30, has played with the reserves for the club, where his father-in-law is chairman, for five years, and thought it would be the perfect venue for a children’s bike and trike challenge.

The couple, of Timor Road, are hoping to raise as much as possible for the Children’s Intensive Care Unit at Bristol Children’s Hospital, where Maisie was cared for.

Maisie died last May aged just nine weeks and four days, after suffering from spinal muscular atrophy, a genetic condition which is most severe in babies. The event, on September 4, will raise money through sponsorship as youngsters aim to complete five full laps of the pitch.

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McNeeley Foundation’s goal is to help children

August 23, 2011

McNeeley Foundation’s goal is to help children

The Payson Roundup | August 19, 2011 | By Max Foster

What began seven years ago as a small-town, grass roots effort to earn $8,000-plus to buy a motorized wheelchair, called a Go-Bot, for a 5-year-old Pine boy who suffered from spinal muscular atrophy, has blossomed into a charity that has earned and donated more than $40,000 to pay medical expenses for needy Rim Country children.

The Justice McNeeley Foundation, which is run entirely by unpaid volunteers, has a motto of “Help Us Help a Child” and helping is what the organization does best.

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