Mya’s brave walk for friend

March 24, 2011

Mya’s brave walk for friend

The Border Mail | March 24, 2011

A FRIENDSHIP forged through hardship is the driving force behind a seven-year-old cerebral palsy sufferer’s plan to walk Dean Street.

Albury’s Mya Irving is hoping people will sponsor the eight-block walk next month in a bid to raise the $35,000 needed to modify a car to take an electric wheelchair for her friend Rajah Sutherland, 5.

Rajah suffers from spinal muscular atrophy, a condition that weakens the spine and muscles and forces her to rely on a wheelchair.

The pair met through a disability support service and hydrotherapy.

Without the modified car her Jindera mother Ellen Sutherland is largely housebound.

Click HERE or on the image below to read more…

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Posted by stronwi

Party With A Purpose To Help Andrew Fight SMA

March 24, 2011

Party With A Purpose To Help Andrew Fight SMA

The 2nd Annual Party With a Purpose to help Andrew Creighton and FightSMA (Spinal Muscular Atrophy) Mechanicsville will be held from 7 to 11:30 p.m. Friday, April 8, at Plant Zero at Zero E. 4th St. in Richmond.

Each person is asked to raise a suggested $100 to help continue the fight against Spinal Muscular Atrophy.

Party-goers will enjoy an evening filled with cuisine from White House Catering, beverages, dancing, a silent auction and raffle.

Entertainment is being provided and donated by Mechanicsville DJ, Bill “Everyday” Holliday.

Click HERE or on the image below to read more…

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Posted by stronwi

‘American Idol’ Star Robbie Rosen Sings at Legislature

March 24, 2011

‘American Idol’ Star Robbie Rosen Sings at Legislature

MineolaPatch | March 24, 2011 | By Geoffrey Walter

By now, 17-year-old Robbie Rosen is used to performing in front of crowds.

The junior from Calhoun High School finished this years’ “American Idol” competition in the Top 24 after his renditions of Paul McCartney’s “Yesterday,” “Moody’s Mood for Love,” “I Want You Back” and “Got to Get You Into My Life” in the group performances, and Elton John’s “Sorry Seems to Be the Hardest Thing” to move him through the various rounds of the FOX show’s competition.

Click HERE or on the image below to read more…

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Posted by stronwi

Malvern Blooms 2011 Will Benefit Sweet Baby Zane, Families of Spinal Muscular Atrophy

March 24, 2011

Malvern Blooms 2011 Will Benefit Sweet Baby Zane, Families of Spinal Muscular Atrophy

MalvernPatch | March 24, 2011 | By Pete Kennedy

A portion of proceeds from this year’s Malvern Blooms Festival will be donated to Families of Spinal Muscular Atrophy, who will use the money to purchase car seats for children with the disease.

The donation will be facilitated by Sweet Baby Zane, a Malvern-based group founded in memory of Zane Schmid, who succumbed to type I SMA at just five months old. Her twin sister, Avery, does not carry the SMA gene.

Click HERE or on the image below to read more…

Leave a Comment » | Equipment, FSMA, Fundraiser, Pennsylvania, Sweet Baby Zane, United States | Tagged: , , , , , | Permalink
Posted by stronwi

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.

Click HERE or on the image below to read more…

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

A gift of independence

March 23, 2011

A gift of independence

Echo Press | March 23, 2011 | By Tara Bitzan

DeAnn Runge of Alexandria was a senior in high school when she set her sights on getting a dog. She was looking for more than just companionship – she was seeking greater independence.

Runge suffers from spinal muscular atrophy (SMA), a genetic disease that causes progressive muscle degeneration and weakness.

There are varying degrees of SMA, and Runge says she’s “in the middle” of the spectrum. She has never been able to walk and has limited upper body strength.

She was watching a Dateline television program about a girl with SMA who was aided in her daily tasks by a service dog.

“Instantly I knew having a service dog would change my life,” said Runge, a 1998 Jefferson High School graduate.

Click HERE or on the image below to read more…

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Posted by stronwi

Castle Rock boy beating the odds

March 23, 2011

Castle Rock boy beating the odds

FOX (Denver) | March 23, 2011 | By Ginger Delgado

Vodpod videos no longer available.

CASTLE ROCK, Colo. — A five- year-old boy from Castle Rock with a rare genetic disorder is beating the odds, thanks to his family who won’t give up.

Reece Rubino was not supposed to live past the age of two, according to his doctors, but his parents fought to keep him alive and give him hope.  Reece was born with Spinal Muscular Atrophy or SMA.

There are different types of the disease, but Reece has the most severe — Type One — which paralyzes children from head to toe.  It’s a deadly disease for which there’s no cure.  But Reece is living, learning and defying the odds.

Click HERE or on the image below to read more…

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Posted by stronwi

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.

Click HERE or on the image below to read more…

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

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.

Click HERE or on the image below to read more…

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

The Story of a Family Saved by Obamacare

March 23, 2011

The Story of a Family Saved by Obamacare

FOX (Phoenix) | March 22, 2011

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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.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Arizona, Health Insurance, Legislation, United States | Tagged: , , , , | Permalink
Posted by stronwi

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