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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Disabled San Antonio student lobbies for PE substitute

April 13, 2011

Disabled San Antonio student lobbies for PE substitute

mySanAntonio.com | April 12, 2011 | By Francisco Vara-Orta

A bill championed by a San Antonio high school student and a state representative to get a substitute physical education class for disabled students advanced in the House on Tuesday.

“It is completely unhelpful for children in my situation to sit there and have to experience this,” Jonathon Stach, a wheelchair-using junior in the International Baccalaureate program at Burbank High School, told the House Education Committee.

After testimony from a handful of people supporting the bill, the committee unanimously voted to send it to the House. The bill, proposed by state Rep. Joe Farias, D-San Antonio, could go into effect next school year.

Stach exemplifies the need for House Bill 692.

When he was 18 months old, Stach was diagnosed with spinal muscular atrophy, a motor neuron disease that affects voluntary muscles used for activities such as crawling, walking, head and neck control, swallowing and respiratory functions.

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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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The Story of a Family Saved by Obamacare

March 23, 2011

The Story of a Family Saved by Obamacare

FOX (Phoenix) | March 22, 2011

Vodpod videos no longer available.

PHOENIX – This week marks the one year anniversary of the Affordable Care Act, known by many as Obamacare. We talked to a family in the valley who has reaped a benefit from this law, which has had a polarizing effect on the country.

Lauren Byrd and twin brother Kyle are, in many ways, just your typical preschoolers. Cute, curious and full of energy — except they have a rare, and expensive condition.

“Their brains work fine, they’re just trapped in a body that doesn’t work,” says dad Chris Byrd.

“They can’t spend their energy going through the sandbox on their own, they are stuck sort of sitting around observing the world, that’s where they get all their charm from,” says mom Cassandra Byrd.

Spinal muscular atrophy is the disability that makes life a little more difficult for Chris and Cassandra, and the financial costs of this condition can be astronomical.

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Disabled kids, educators rally at the Capitol

March 10, 2011

Disabled kids, educators rally at the Capitol

Times Union | March 10, 2011 | By Casey Seller

An estimated crowd of 600 disabled students, family members and educators joined legislators this morning in the well of the LOB to call on Gov. Andrew Cuomo to pull back on an element of his budget proposal that would change the way “4201″ schools are funded. New York has 11 state-supported private schools that work with 1,500 student who are blind, deaf, or fall within an additional range of disabilities.

Under the current system, 10 percent of the cost of each pupil is covered by the local school district, while 90 percent is picked up by a discrete state appropriation distributed by the Education Department. Cuomo’s budget proposal would require the local district to pick up the tab, as is the case with other special education schools. The state would then reimburse 85 percent of the remaining cost, throwing the remainder back on the district. The end result would be a 13.5 percent reduction in state spending on the schools on average, although the cut sustained by each school would be up to the individual district.

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