Ella’s Story: ‘I’m Not Here to Save Her. I’m Here to Take Care of Her’

February 2, 2012

Ella’s Story: ‘I’m Not Here to Save Her. I’m Here to Take Care of Her’

ElmhurstPatch | February 2, 2012 | By Karen Chadra

Ella Casten is a smart, inquisitive little girl with a smile that will melt your heart.

In most ways, she is a typical 1 1/2-year-old. She loves her dog, her toys, and her brother and sister, Henry and Ava. She speaks in cute toddler language and wants to do things all by herself.

But she can’t. Her muscles won’t let her. Ella has a rare, genetic neuromuscular disease called spinal muscular atrophy, for which there is no treatment or cure. Her motor neurons are dying, causing her to lose muscle function. She first lost the use of her legs, and now she has trouble reaching and lifting even small toys.

Ella was born on June 10, 2010. She started out seemingly healthy, hitting all the normal developmental milestones in her first year. She began to stand and take a few steps.

Just five months ago, all that changed.

Her parents, Lincoln Elementary School teacher Michael Casten, and Lindsay Casten, a former Lincoln teacher, began to try to unravel the mystery with the help of pediatricians and therapies. An Internet search revealed what they had hoped was not the answer.

“I’ll never forget that night,” Lindsay said. “I Googled hypotonia (poor muscle tone) and hand tremors and one of the things that came up was SMA. Of all the possibilities we had been told, we didn’t want it to be that.”

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Playground for Physically Disabled Children Scheduled for Summer Completion

December 9, 2011

Playground for Physically Disabled Children Scheduled for Summer Completion

Woodbury Patch | December 9, 2011 | By Zac Farber

Before Madison Claire Millington died at the age of 2 in 2004, her mother, Dana, was frustrated by Madison’s inability to enjoy any of Woodbury’s playgrounds.

Madison was born with spinal muscular atrophy—a genetic disease that destroys the nerve cells controlling voluntary muscle movement—and she was restricted to a stroller.

“We couldn’t take Madison and our other two children together to go to any of the playgrounds in Woodbury,” Dana Millington said, “because she was stuck in a special stroller and I wasn’t able to get her access to the structure.”

Shortly after Madison’s death, Dana heard about a California organization, Shane’s Inspiration, founded by parents who had lost their son to spinal muscular atrophy. The organization raised money to build playgrounds where children with physical and developmental disabilities could play alongside their “typically able” peers.

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Zumbathon will boost research efforts of the SMA Trust

November 17, 2011

Zumbathon will boost research efforts of the SMA Trust

Messenger | November 17, 2011

AN Altrincham couple are holding the north west’s largest ever Zumbathon event – to raise funds for research into a devastating condition that affects their baby son.

One-year-old David Dee was diagnosed in July with spinal muscular atrophy – a genetic muscle wasting condition affecting one in 6,000 children that there is currently no cure for.

David is unable to sit up or walk by himself and doctors say he will never walk.

However, there is some hope, as clinical trials by the charity the SMA Trust continue to make significant advances and a new drug is currently being tested in human trials.

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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.

email: ngrey@newspress.com

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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

mySanAntonio.com | 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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