Whittier mom trying to find cure for daughter’s disease

August 25, 2012

Whittier Daily News | August 24, 2012 | By Sandra Molina

WHITTIER – Jaclyn Davis first heard the words, “spinal muscular atrophy” in July 2010.

Her daughter Isabella Joy, who prefers to be called Bell, was visiting a neurologist, when he told the young mom his diagnosis.

“The neurologist sent me to a geneticist to have yet more blood work done,” Davis said. “On August 29th of 2011, just two months before Bell’s second birthday, I received the devastating news that the blood work confirmed she was positive for SMA.”

Spinal muscular atrophy, the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

There are certain moments in people’s lives that carry great significance.

For Davis, 24, this was one of them.

“I remember their words telling me that most SMA children don’t live past two years of age,” she said. “I though to myself, `well, she’s almost two, and she seems so healthy.”‘

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Gwendolyn Strong Foundation and Santa Barbara Wealth Management Firm Join Forces to Raise Funds and Awareness for Spinal Muscular Atrophy Research

August 22, 2012

Press Release | August 22, 2012

Mission Wealth Management, LLC aims to raise $10,000 towards research for a cure for spinal muscular atrophy (SMA) with the Gwendolyn Strong Foundation (theGSF.org) at the Santa Barbara International Marathon on November 10, 2012.

SMA is the number one genetic killer of infants and young children. Currently, there is no treatment and no cure to help children suffering from this degenerative disease which hinders their ability to walk, stand, eat, speak, breathe, and swallow.

In fact, the National Institute of Health (NIH) has identified SMA as a “model disease” because any advance in SMA genetic research has the potential to directly impact the treatment or cure of more than 600 other diseases, including muscular dystrophy, Parkinson’s disease and Alzheimer’s disease.

Mission Wealth Management is joining Team GSF and their clients, the Strong family, to help raise money for research towards a cure. “In working with the Strong family with their personal financial planning, we became aware of their mission with the Gwendolyn Strong Foundation,” said Seth Streeter, Co-Founder and President of Mission Wealth Management, LLC. “We were so moved by their tremendous passion and commitment that we wanted to show our support by participating in the upcoming Santa Barbara International Marathon to help raise funds and awareness for this most worthy cause. We invite the whole community to join us in what will be a very special day.”

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With a cure in sight, Alyssa plans annual ‘Working on Walking’ fund-raisers

July 19, 2012

With a cure in sight, Alyssa plans annual ‘Working on Walking’ fund-raisers

The Valley Breeze | July 18, 2012 | By Meghan Kavanaugh

CUMBERLAND – It has been just over a decade since 10-year-old Alyssa Silva began designing greeting cards to raise research money for spinal muscular atrophy, a genetic disorder that causes her spinal nerve cells to degenerate, leaving her wheelchair bound.

Eleven years later, the 21-year-old Bryant University senior and dean’s list regular has raised approximately $70,000.

And she said scientists may be within five years of finding a cure.

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Beating the odds against Spinal Muscular Atrophy

February 15, 2012

Beating the odds against Spinal Muscular Atrophy

The Chronicle | February 15, 2012 | By François Lemieux

There are things in life we take for granted, like walking, eating, or using our muscles for the basics of day-to-day activities we need to get through work or school. Eleven-year-old Sammy Cavallaro doesn’t have this luxury. He has Spinal Muscular Atrophy (SMA), a motor-neuron disease that confines him to a wheelchair and impairs his muscular movements.

On Feb. 18, Sammy’s family is organizing a major fundraiser to generate awareness of the little-known disease and to raise funds for research. The event, called ‘Sammy’s Valentine Gala’, will take place at 6600 Montée de Liesse in Ville St. Laurent.

“It’s like an Italian dinner; we eat, we drink, we dance, there is a silent auction, there are raffle prizes, just a lot of fun and you give to a great cause,” said Sammy’s mother Rosa Cavallaro, last week. “Every year we do a fundraiser, around Valentine’s Day. This is our ninth one.”

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Mom Hopes To Build Playground In Daughter’s Memory

February 8, 2012

Mom Hopes To Build Playground In Daughter’s Memory

CBS Minnesota | February 8, 2012

Raising a big amount of money hasn’t come easy for one Woodbury mom who’s trying to do something special in honor of the daughter she lost.

Madison Claire Millington died August 2004 when she was only 2 years old. When she was diagnosed with Spinal Muscular Atrophy, her mom, Dana Millington, was told that Madison Claire only had one year to live.

Almost eight years later, Millington calls her youngest daughter Emerson a miracle. Emerson had a one in four chance of inheriting the same deadly muscular disease that took her sister, Madison Claire.

To ensure that Emerson wasn’t born with Spinal Muscular Atrophy, Millington and her husband used In Vitro Fertilization and a process which tests the eggs for genetic abnormalities before they’re fertilized.

The time spent with Emerson is special considering the difficulties of parenting a child with SMA.

“(Madison) had her special stroller. We had oxygen tanks we had to take with,” said Millington. “Even going to the park, we couldn’t go through the sand and rocks for me to also be with my other two children.”

It was that specific challenge that compelled Millington to help others. After Madison died, she made it a priority to raise enough money for a playground that every kid could use, in honor of her daughter.

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Florence teens grant wish of 5-year-old with Spinal Muscular Atrophy

February 7, 2012

Florence teens grant wish of 5-year-old with Spinal Muscular Atrophy

SCNow.com | February 3, 2012 | By Patricia Burkett

FLORENCE- A legacy of giving came full circle in Florence Wednesday, as high school students came together to honor the legacy of a former assistant principal while making one child’s dreams come true.

Members of West Florence High School’s student government began a fundraising campaign on Dec. 1, to collect money to grant the wish of five-year-old Grace Dixon.

Representatives from the Make-A-Wish Foundation asked officials at the school if they would like to help grant the wish of Dixon, who suffers from Spinal Muscular Atrophy.

The condition causes progressive muscle degeneration and weakness.

Grace’s mother, Robin, said she was very surprised when she found out that her child’s wish would be granted through the generosity of other young people.

“It was very heartwarming and amazing,” Robin Dixon said.

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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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Heroes In The Making: Luke Hennessy and Hayley Nilsen

January 23, 2012

Heroes In The Making: Luke Hennessy and Hayley Nilsen

NBA.com | January 17, 2012 | By Mark Remme

Six-year-old Luke Hennessy and 7-year-old Hayley Nilsen got the thrill of a lifetime Monday at Target Center. The two were the Timberwolves’ special guests during their game against the Kings, and Luke and Hayley got the opportunity to be recognized on the court, watch the game and be part of the Wolves’ family.

It was the Timberwolves’ way of honoring Luke, of Prior Lake, and Hayley, of Edina, for their courage and strength.

As part of WolvesCare Month presented by C.H. Robinson Worldwide, the FastBreak Foundation is focusing its attention on the Timberwolves’ toughest fans this month—children with life-threatening or long-term illnesses. Luke and Hayley were Monday’s “Heroes In The Making.”

Luke was diagnosed with Spinal Muscular Atrophy when he was 17 months old, and Hayley was diagnosed with a form of Muscular Distrophy called Charcot-Maire-Tooth when she was 5.

Timberwolves President Chris Wright and C.H. Robinson Worldwide Representative Maxim Rivkin presented them each with a jersey and an autographed team ball at center court during the third quarter.

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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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