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.

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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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Saturday triathlon to benefit Gwendolyn Strong Foundation

March 4, 2011

Saturday triathlon to benefit Gwendolyn Strong Foundation

Daily Sound | March 4, 2011 | By Nick C. Tonkin

This Saturday you can you can perform all the events of triathlon, while leaving your wetsuit, bike, and sunscreen at home and fight spinal muscular atrophy at the same time.

And don’t worry about the weather. Killer B Fitness is hosting Gwendolyn’s Indoor Triathlon, a charity event to benefit the Gwendolyn Strong Foundation, a non-profit dedicated to raising awareness and funding research on spinal muscular atrophy.

Click HERE or on the image below to read more…


The numbers don’t lie: Healthcare reform law is helping Californians

January 9, 2011

The numbers don’t lie: Healthcare reform law is helping Californians

Ventura County Star | January 8, 2011 | Representative Lois Capps

In the long-running television series “The West Wing,” President Josiah Bartlett exclaims, “If you want to convince me of something, show me numbers.” Well, I’ve seen the numbers on the historic health insurance reform law passed last year and they show how it’s making a difference in the lives of people across the Central Coast and this country.

That’s why when the new leadership of Congress rushes a bill to the floor this week to repeal the law, I’ll be voting no. Healthcare reform guarantees that tens of millions of Americans currently without coverage will soon get it. According to The Star’s own reporting, 22 percent of adults in Ventura County are uninsured. But the law is especially important for the millions of people already covered because it guarantees affordable insurance will be there when you need it most.

For example, the law has already banned the odious insurance company practice of refusing coverage to children with so-called “pre-existing conditions.” In the next few years that protection will apply to all adults as well. In the meantime, states have set up plans for individuals who have already been turned away by insurance companies. And insurance companies are now banned from imposing lifetime limits to restrict how much healthcare you can receive under their plans.

We all know people who are already benefitting from this new law. But I was particularly moved when I recently read in the paper about the Strong family of Santa Barbara. At 6 months old, Bill and Victoria Strong’s daughter, Gwendolyn, was diagnosed with a rare disease, spinal muscular atrophy. Her care is extremely expensive, and before healthcare reform the Strongs lived in constant fear that Gwendolyn would reach her individual policy’s lifetime limit and become uninsurable because of her pre-existing condition.

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Capps Highlights Santa Barbara Family’s Health Care Predicament

January 6, 2011

Capps Highlights Santa Barbara Family’s Health Care Predicament

Noozhawk | January 6, 2011 | By Ashley Schapitl

Rep. Lois Capps, D-Santa Barbara, spoke out Thursday against the Republican move to immediately repeal the newly passed health insurance reform law.

She highlighted the story of how the Strong family of Santa Barbara — daughter Gwendolyn was born healthy but was diagnosed with the terminal disease spinal muscular atrophy at 6 months old — has benefited from the implementation of this law, specifically the elimination of lifetime caps on coverage. A copy of Capps’ remarks is included below.

Click HERE or on the image below to read more or see below for the YouTube video of Capps’ remarks on the House floor…

 


A Family Fights Spinal Muscular Atrophy | NPR

October 1, 2010

A Family Fights Spinal Muscular Atrophy

NPR – California Report | October 1, 2010 | By Diane Bock

The world seems like a big, dangerous place for a baby. But sometimes the threat comes from genes. Spinal muscular atrophy, or SMA, is the most common genetic killer of infants and young children worldwide. We profile a Santa Barbara family fighting SMA


Cap Lifts, and So Do Spirits | New York Times

September 22, 2010

Cap Lifts, and So Do Spirits

New York Times | September 22, 2010 | By Kevin Sack

As a healthy couple in their mid-20s, Bill and Victoria Strong’s last concern when shopping for health insurance was a cap on lifetime benefits. Then Gwendolyn was born, and six months later was found to have spinal muscular atrophy Type I, a degenerative condition that typically kills its victims before age 2.