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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Vaqueros Team Up With Gwendolyn Strong Foundation

September 28, 2011

Vaqueros Team Up With Gwendolyn Strong Foundation

KEYT-3 (ABC) | September 27, 2011 | By Mike Klan

Vodpod videos no longer available.

Santa Barbara City College Football has a new community outreach campaign called The Vaquero Honorary Captain Program. This year they are celebrating examples of strength, courage and spirit by honoring and raising awareness for individuals and/or groups. This past Saturday Gwendolyn Strong served as honorary captain during their game against Moorpark. Gwendolyn, who is almost four years old, has Spinal Muscular Atrophy (SMA), the #1 genetic killer of babies. SMA is degenerative and fatal. Most people with SMA do not live past two years old. For more information on this disease, visit ENDSMA.org.

Click HERE or on the image below to see story and video on the KEYT-3 website…


Couple wants to spread the word about little known genetic disorder

June 10, 2011

Couple wants to spread the word about little known genetic disorder

The Acorn | June 9, 2011 | By Sylvie Belmond

A young local couple who wanted to start a family saw their dreams dashed when they learned they both carry a little-known genetic defect that kills more children than any other inherited disease.

A month after their storybook wedding in Santa Barbara in May 2010, Stephanie and Brandon Humes decided to start a family.

“ We both just really love children,” said Stephanie Humes, who grew up in Calabasas. “Even on our first date we talked about children. It was important to us to have a family young so we could travel with our kids and do fun things,” she said.

To ensure that their baby would be healthy, the couple visited an obstetrician who offered a long list of genetic tests, including one for spinal muscle atrophy (SMA).

Most children who have Type 1 spinal muscle atrophy die before age 3 due to muscle weakness and atrophy.

Although Stephanie and Brandon had never heard of SMA, she said she opted to get the test because it was one of the top three suggestions on her doctor’s list.

When results showed that she’s a carrier of the defective gene, the doctor suggested that Brandon also be tested.

His test also came back positive.

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Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick

May 2, 2011

Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick

Huffington Post | May 2, 2011 | By Don C. Reed

“He is right here,” said Pranav’s mother, in her lilting Indian accent; “would you like to speak to him?”

For a moment I was actually afraid; I don’t know why.

Pranav had Spinal Muscular Atrophy (SMA) a disease like a slow spinal cord injury. Like the paralysis which afflicts my son Roman Reed, SMA is not “catching”, and in any case we were on the telephone.

“Hello,” said a surprisingly deep voice, very dignified. I had a sudden thought — he sounded like a politician, a good one, somebody who would use the power of government to help people.

We talked about Disneyland and Elmo, both of which he strongly approved.

But the conversation was tiring for him, and we soon said goodbye.

He was three years old.

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Her little pony : Miniature horse provides a spark in the life of a terminally ill child

April 14, 2011

Her little pony : Miniature horse provides a spark in the life of a terminally ill child

Santa Barbara News-Press | April 13, 2011 | By Karna Hughes

Horses have always held a special place in the hearts of little girls. Maybe it’s the way their manes hang down — kids can’t help wanting to run their fingers through them. Or maybe it’s how powerful the animals are, the way they seem like they can vanquish anything as they gallop around.

The family of Gwendolyn Strong, 3, may never know exactly why she loves horses, because her mouth can’t form the words to tell them.

Diagnosed at 6 months old with type I spinal muscular atrophy, she has to wear a respirator to help her breathe because the muscles around her lungs have atrophied.

But it’s clear how much Gwendolyn is thrilled by ponies in the way her big blue eyes light up when she sees one. The sight of a horse will also cause her to make what her mom, Victoria, calls her “happy sound” — guh, guh, guh!”

Cognitively, she’s just the same (as other 3-year-olds) but the disease is degenerative, so as time goes on, she’s more and more impacted,” said Mrs. Strong, 34, a Santa Barbara resident.

Spinal muscular atrophy, which affects nearly one in every 6,000 babies, causes wasting in every muscle in the body and has no cure. It’s a terminal disease; most children who have type I die at 2 years old.

Gwendolyn can’t sit, stand, walk, eat or breathe without assistance. So she’s supported by a battery of machines, including a feeding tube, a suction device that helps her swallow, and heart-rate and oxygen monitors.

Click HERE or on the image below to download the story and read more…


Capps to Mark Anniversary of Health-Care Law with Santa Barbara Families

March 23, 2011

Capps to Mark Anniversary of Health-Care Law with Santa Barbara Families

Noozhawk | March 22, 2011

Rep. Lois Capps, D-Santa Barbara, will commemorate the first anniversary of the signing of the federal health-care law on Wednesday with birthday cake and a roundtable discussion with Santa Barbara families from 3 p.m. to 4 p.m. Wednesday, March 23 at Shoreline Park.

Capps will talk specifically about how the health-care law has benefited children and families in its first year of implementation, focusing on the implementation of the Patient’s Bill of Rights, which banned lifetime limits on coverage and discrimination against children with pre-existing conditions.

Capps also will moderate a roundtable discussion with parents to hear their stories and feedback about what families are most concerned about when it comes to health care.

Included in the roundtable discussion will be Bill and Victoria Strong, founders of the Gwendolyn Strong Foundation, a nonprofit focused on spinal muscular atrophy named for their daughter.

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Child’s death inspires half marathon runners

March 8, 2011

Child’s death inspires half marathon runners

SouthCoastTODAY.com | March 8, 2011 | By Don Cuddy

NEW BEDFORD — It is difficult to imagine the grief that accompanies the death of a 2-year-old child. But the Simmons family of New Bedford has found solace in the knowledge that the loss of their son, Owen, to a childhood disease in 2009 has inspired dozens of men and women to get out and train for this year’s New Bedford Half Marathon.

The runners are dedicating their efforts to raise awareness of spinal muscular atrophy, a leading cause of death in infants and toddlers. One in 6,000 babies is born with SMA, a motor neuron disease that attacks voluntary muscle movement and leaves children trapped inside their own bodies.

Many of the runners are novices but have drawn inspiration from the leadership of Stephen Taylor, a resource police officer at New Bedford High School. Andrew Simmons, Owen’s father, is a New Bedford police detective and a colleague of Taylor.

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