Crunch Time for Paralysis Cure!

May 23, 2011

Crunch Time for Paralysis Cure!

Daily Kos | March 23, 2011 | By Don C. Reed

If you would like California to support research to cure paralysis, today is the day to be heard.

If you support research to cure paralysis, there are some California legislative Aides who need to hear from you!

It does not matter where you live. The importance is that they hear from you.

Write to the aide—the member’s name follows. Remember, just a sentence or two is all that is needed! If you want ideas, take a look at the latest I put together, at the bottom. If you only have time to do one, make it the top, aide for the chairman, Felipe Fuentes, and the vice-chair, Diane Harkey.

Click HERE or on the image below to read more…


Batten disease parents aim at screening

May 23, 2011

Batten disease parents aim at screening

San Francisco Business Times | May 20, 2011 | By Ron Leuty

Trying to find patients for clinical trials of rare disease treatments can be tough. But following StemCells Inc.’s abrupt shelving of an early-stage trial in Batten disease, patient advocates and parents of kids afflicted with deadly malady are charged up to ensure it isn’t so difficult anymore.

It’s a backstory that runs from Palo Alto to Jacksonville, Fla. — catching Vacaville, San Diego, Columbus, Ohio, Austin, Texas, Kansas City, Mo., Houston and Santa Fe, N.M., in between — and it says a lot about the power of individuals to make a difference.

The story didn’t begin with Palo Alto-based StemCells’ (NASDAQ: STEM) difficulty finding the right Batten disease patients for its trial, as I report in this week’s print edition. For years, patient advocates have been trying to get better screening of Batten disease carriers, so it reduces the risk of more children being born with the brain-wasting disease. Parents now can spend months, if not years, trying to get a correct diagnosis, allowing the disease to kill more neurons and making it less likely that companies will be able to generate the data they need to get therapies approved.

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Benefit concert for spinal muscular atrophy Saturday

May 23, 2011

Benefit concert for spinal muscular atrophy Saturday

MercuryNews.com | May 18, 2011 | By Eric Louie

DANVILLE — Danny McHale was 6 months old when doctors diagnosed him with spinal muscular atrophy. His parents were told he probably wouldn’t live to his first birthday.

A decade later, the Danville boy is now a fifth-grader at Green Valley Elementary School. Among other interests, Danny is proud of the reigning champion San Francisco Giants and excited over the San Jose Sharks’ playoff run.

His parents and other families dealing with the disease, who on Saturday are holding their 11th annual fundraiser in hopes of finding a cure, said it’s because of children like Danny that they continue their efforts.

“If we stopped, they would think we’ve given up,” said his mom, Mary. “If you stop, the kids think there’s no hope.”

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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…


No More Lifetime Limits: Real Life Effects of the Health Care Law

March 23, 2011

No More Lifetime Limits: Real Life Effects of the Health Care Law

Care2 | March 23, 2011 | By Kathy Mitchell

A million dollars is still a lot of money, until we get seriously ill.Three year old Gwendolyn, of Santa Barbara, California, was born with spinal muscular atrophy. Covered under her father’s health insurance plan, she has been getting excellent care but the astronomical bills were quickly approaching his lifetime coverage limit. After that, her father didn’t know how he would keep the treatments going or avoid bankruptcy.

Until now.

The new federal health insurance law, one year into its incremental implementation, eliminated lifetime limits for most health plans and has started to phase out annual coverage limits as well.

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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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Rep. George Miller celebrates anniversary of health care law passage

March 23, 2011

Rep. George Miller celebrates anniversary of health care law passage

Contra Costa Times | March 22, 2011 | By Paul Thissen

CONCORD — Rep. George Miller spoke Tuesday to celebrate the anniversary of the passage of the health care reform act and highlight its provisions that have already taken effect.

“This is the law that every day is extending benefits to families,” said Miller, D-Martinez. “I wish it was 2014 tomorrow.”

He called the idea of repealing the act “insane.”

Many provisions of the Patient Protection and Affordable Care Act — subsidies for those who cannot afford health insurance and the requirement that individuals buy coverage, to name two — do not take effect until 2014.

Miller invited a handful of residents to speak about the law’s provisions that already are in place. These include allowing people to stay on their parents’ health insurance plans until they are 26 years old, outlawing lifetime coverage limits on insurance plans and preventing children with pre-existing conditions from being denied coverage.

Rebecca Barrett, a Concord High School graduate and senior at UCLA, spoke about being unsure that she would find a job once she graduated — and glad that she could now remain on her parents’ health plan.

Meri Phelps, whose son has spinal muscular atrophy, spoke about how lifetime coverage caps can be devastating for those with disabilities.

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New foundation works to fund playground’s 2nd phase

March 22, 2011

New foundation works to fund playground’s 2nd phase

The Orange County Register | March 21, 2011 | By Fred Swegles

A local foundation is trying to fund Phase 2 of Courtney’s SandCastle, a universally accessible playground that is under first-phase development in a city sports park being built on Avenida Vista Hermosa in San Clemente.

The City Council voted May 18 to build Phase 1, featuring play structures themed as a castle and a sailing ship designed to be accessible for all kids, including those with disabilities. The cost was $658,000.

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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…