Fairfield man shows off his artistic side by painting with his wheelchair in Vacaville

February 21, 2011

Fairfield man shows off his artistic side by painting with his wheelchair in Vacaville

The Reporter | February 21, 2011 | By Melissa Murphy

Doing something he’s always wanted to do, Fairfield resident Jeremy Hatzell will get to paint — with his wheelchair.Using vibrant colors and a canvas spread on the floor, Hatzell used his artistic side to bring the blank sheet to life at the Rhythm in Blue art studio in downtown Vacaville.

“I want it to look like Chuck Norris punched a rainbow,” he said. “I saw a car commercial where a car drove through paint and I thought I could do that too.”

Hatzell wasn’t expected to live past the age of 4 after doctors diagnosed him with spinal muscular atrophy at 8 months old.

At age 33, Hatzell knows there is a reason he is still here.

Click HERE or on the image below to read more…

1 Comment | California, Inspiration, Uncategorized, United States | Tagged: , , | Permalink
Posted by stronwi

Network of caregivers shuttles children and families through the complex world of critical and life-ending illness

February 17, 2011

Network of caregivers shuttles children and families through the complex world of critical and life-ending illness

Monterey County Weekly | February 17, 2011 | By Adam Joseph

Cynthia Guzman was diagnosed with sulfite oxidase deficiency, a rare metabolic disorder, when she was only 6 days old. Doctors predicted she would die within a few months.

“We cried a lot,” says her father, Jose. “They said they weren’t going to be able to do anything.”

Seven years later, Cynthia is living in North Salinas and, according to her doctors, is the world’s longest-living sulfite oxidase deficiency patient. She can’t walk or talk, nor can she breathe, swallow or eat on her own. Someone has to keep an eye on her at all times to make sure she doesn’t suffocate on her saliva. Her team of pulmonary, neurology and gastrointestinal specialists at Lucile Packard Children’s Hospital at Stanford have no idea how long she’ll live.

Click HERE or on the image below to read more…

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Posted by stronwi

Siblings beat the odds, continue to fight for a cure for muscular dystrophy

February 15, 2011

Siblings beat the odds, continue to fight for a cure for muscular dystrophy

The Coast News | February 15, 2011 | By Lillian Cox

OCEANSIDE — Sarah Carlson of Oceanside has exceeded expectations all her life. When she was diagnosed with muscular dystrophy, or MD, at 18 months old her parents were told she wouldn’t live beyond five years. Today she is a popular, 22-year-old biology major at Palomar College with plans of becoming a research scientist.

Younger brother, Scott, 20, also has MD. Like Sarah, he’s both tough and smart. Scott’s a junior in the aeronautical engineering department at UCSD with plans to go on to graduate school and pursue a career with Boeing or another defense contractor.

Currently, the siblings are recruiting members for Carlson & Co., their fundraising team, which is generating sponsors for the upcoming MDA Muscle Walk San Diego in Mission Bay on Feb. 27.

Click HERE or on the image below to read more…

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Cedars-Sinai Research Team Awarded $1.9 Million from State Stem Cell Agency to Develop New Tools and Technologies

February 2, 2011

Cedars-Sinai Research Team Awarded $1.9 Million from State Stem Cell Agency to Develop New Tools and Technologies

Newswise | February 2, 2011

A team of scientists from the Cedars-Sinai Regenerative Medicine Institute has been awarded a $1.9 million grant from the California Institute for Regenerative Medicine to fund development of a new technique to aid pharmaceutical discoveries for specific diseases.

Additionally, another team from the Cedars-Sinai Department of Surgery will share a $1.5 million grant with a medical technology company aiming to develop a new imaging system.

The Tools and Technology grants from the California stem cell agency support the early-stage development and evaluation of innovative tools and technologies to overcome current roadblocks in translational stem cell research.

Click HERE or on the image below to read more…

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In a Perfect World: A Law to Cure Paralysis — Paid for by Those Who May Cause It!

February 2, 2011

In a Perfect World: A Law to Cure Paralysis — Paid for by Those Who May Cause It!

The Huffington Post | February 2, 2011 | By Don C. Reed

A two-year-old runs out on a neighborhood street — just as a reckless driver roars around the corner.

A screech of brakes, a scream of fright — but a hand snatches the toddler back, just in time. The parent hugs and soothes the terrified child, the car disappears in the distance… and its driver gets away with a crime that could have ruined a life, and a family.

In a perfect world, a siren would sound, a red gumball would start blinking, and the neighborhood would applaud the driver’s capture, and the impounding of the car.

We do not live in a perfect world. But we can and should hold drivers accountable for their vehicular misbehavior, especially when it endangers the public.

Click HERE or on the image below to read more…

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New playground design adds ‘sensory garden’

January 27, 2011

New playground design adds ‘sensory garden’

The Orange County Register | January 27, 2011 | By Fred Swegles

Supporters of Courtney’s SandCastle, a universally accessible playground to be built in San Clemente, are looking for financial help to get it completed this year – not just the first phase.

Fundraisers Mina Santoro and Don Glasgow unveiled a redesign Wednesday to add a “sensory garden” to the playground, which the City Council agreed to fund last May as part of a 45-acre sports park now under construction along Avenida Vista Hermosa. The council deferred Phase 2 until later.

In its current design, Phase 2 would cost $286,000, Glasgow said. On Wednesday, the San Clemente Rotary Club gave $6,000.

Glasgow said his group has more than $80,000 in bank deposits and receivables, with more pledges in process. “We would like to fully fund the total amount,” he said. “But realistically, we will need help from the city, too.”

The playground is named for Courtney Faye Smith, a San Clemente girl confined to a wheelchair with spinal muscular atrophy. In 2001, when she was 4, adults in her life began searching south Orange County for a place to build a playground where Courtney could play with children with and without disabilities.

Click HERE or on the image below to read more…

2 Comments | California, Fundraiser, United States | Tagged: , , | Permalink
Posted by stronwi

Capps Votes Against Repeal of Health Insurance Reform

January 20, 2011

Capps Votes Against Repeal of Health Insurance Reform

Santa Barbara Independent | January 19, 2011

On January 19, Rep. Lois Capps (D-CA) voted against legislation to repeal the Affordable Care Act, which was enacted into law last March. The Patients’ Rights Repeal Act was approved by a vote of 245-189. All House Republicans voted “Yes” to repeal this life-saving law.

“The health insurance reform law is already benefitting families, seniors and small businesses up and down the Central Coast and across the country,” said Capps. “This effort to repeal the whole law, even as it’s still being implemented, is shortsighted and a political distraction. We should keep our focus on getting our economy back on track, addressing the housing crisis and creating jobs.”

During the floor debate, Capps told the story of one of her constituents, Gwendolyn Strong, to illustrate the life-changing impact of the implementation of the critical consumer protections included in the Affordable Care Act. Bill and Victoria Strong’s daughter Gwendolyn was diagnosed with Spinal Muscular Atrophy (SMA) at six months old. Before reform her parents lived in fear that she would reach her lifetime coverage limit and then be denied insurance due to her pre-existing condition. The elimination of lifetime caps has given the Strongs peace of mind—they are guaranteed Gwendolyn will receive the care she needs and their family is protected from bankruptcy. But repeal would put this family back at risk for losing their coverage and potential bankruptcy.

Click HERE or on the image below to read more…

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O.C. families help fight muscular disease

January 18, 2011

O.C. families help fight muscular disease

The Orange County Register | January 18, 2011 | By Fred Swegles

Families from San Clemente and San Juan Capistrano are part of a fundraiser set for Tuesday night in Los Angeles to help efforts to cure spinal muscular atrophy, a hereditary disease that causes muscles to lose function.

Julie Prendiz of San Clemente and her daughter Jessica, a single mom, are participating on behalf of Jessica’s daughter Hannah, who died from SMA at 11 months old in 2009.

Click HERE or on the image below to read more…

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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.

Click HERE or on the image below to read more…

1 Comment | California, Gwendolyn Strong Foundation, Health Insurance, United States | Tagged: , , , | Permalink
Posted by stronwi

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…

 

Leave a Comment » | Advocacy, California, Gwendolyn Strong Foundation, Health Insurance, United States | Tagged: , , , , | Permalink
Posted by stronwi

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