There was a great article this week in the London Daily Telegraph, one of the largest newspapers in the UK, about Natasha Wood.  You may recall that Natasha was the first person interviewed on Fighting Back, the podcast produced by Fight SMA and FighterMom.  She has Spinal Muscular Atrophy Type 2, and is preparing to wrap up the tour of her one-woman autobiographical stage show with a performance at “Her Majesty’s Theater” in London.  The proceeds from the show will go to UK-based SMA charity Jennifer Trust.

Read the Telegraph article here.

Note: Natasha can be a bit bawdy, as the article tells us.  Some language in the article may not be suitable for everyone.

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You may have seen the story running on the spinal muscular atrophy news feed that’s now on the front page of FightSMA.org. The new Ms. Wheelchair 2008 was crowned earlier this month.  37-year-old Kathy LeMieux of Fruitport, MI is  in a wheelchair due to having Spinal Muscular Atrophy Type 3.  She has no use of her legs and limited use of her arms and hands.  Ms. LeMieux says she’ll use her platform as a way to be a public advocate for those with disabilities.

You can read about Kathy LeMieux on the Ms. Wheelchair Michigan website, or read this story about her on Mlive.com.

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Publicity works. That’s the lesson from the story of an SMA family that was turned down for a power wheelchair by their insurance company.

Realizing their son would never walk, the parents of three-year-old Liam Russell, who has Spinal Muscular Atrophy Type II, filed a claim with their insurance company, Assurant, for a power chair. Assurant, however, refused to pay for even a portion of the chair, saying their policies don’t cover electric wheelchairs.

Liam’s parents did two things in response to this, showing they’re true “Fighter Parents” — first, they started a fundraising campaign for donations to buy the chair themselves. They also appeared on national television to tell their story. ABC’s Good Morning America did a story on the family’s predicament and their insurance company’s response.

Lo and behold, Assurant responded after the airing of the story that they were reviewing their policies regarding power chairs. Shortly thereafter, they announced that they would in fact provide coverage for power chairs for new policy holders.

The Russell family will not need Assurant’s help. Their fundraising efforts brought them enough money to purchase Liam’s chair. However, their publicity efforts will help future families in similar situations.

To see video from the GMA story (and Liam, who is adorable), please visit the ABC News video site.

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FightSMA’s science director, Dr. Chris Lorson, is profiled in the Winter 2008 issue of the University of Missouri’s newsletter For All We Call Mizzou.

From the article, “Leading the fight against a killer of infants”:

Although many people have never heard of it, spinal muscular atrophy (SMA) is the leading genetic cause of death among infants. The neurodegenerative disease does not discriminate; it affects all ethnic groups and occurs in approximately one in 6,000 live births.

“It’s a remarkably common ‘rare’ disease,” says Chris Lorson, associate professor of veterinary pathobiology. “Most kids who develop the disease live two to five years. Treatments have been developed to extend that lifespan, but there is still no cure.”

Lorson, PhD ’97, a researcher in the Christopher S. Bond Life Sciences Center, is leading the national effort to change that. With joint appointments in the College of Veterinary Medicine and the School of Medicine, Lorson has been collaborating with researchers on campus and across the country to learn more about what causes the disease and what can be done to stop it.

“The genetics are very clear,” Lorson says. “A single gene is responsible for all clinical forms of the disease, and about 1 in 35 people carries the gene.”

When it functions normally, this particular gene, known as survival motor neuron 1 (SMN1) creates a protein necessary for motor neuron activity. Children born with a defective SMN1 gene suffer from neurodegeneration, which leads to severe muscle weakness and difficulty crawling, walking, controlling their head and neck, swallowing and even breathing.

Lorson, who is also scientific director for the nonprofit organization Fight SMA, says his team is working on a multifaceted approach that includes drug development, supportive care and a gene therapy program to replace the defective gene. Their work could offer insights into treating other diseases such as Parkinson’s, Alzheimer’s and muscular dystrophy.

“SMA represents an outstanding platform for modeling neurodegenerative disorders,” Lorson says. “It is truly an exciting time to be working in this area. Obtaining funding, however, has become a full-time job.”

To read the original article, click here.

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