Caring for a child with a disability or chronic condition, including spinal muscular atrophy, can be expensive and insurance does not cover all needs. According to the 2005/2006 National Survey of Children with Special Health Care Needs, 20% of families with a child with special health care needs pay $1,000 or more out-of-pocket in medical expenses per year for child.

The UnitedHealthcare Children’s Foundation (UHCCF) is doing something to help. UHCCF is offering grants to “provide financial relief for families who have children with medical needs not covered or not fully covered by their commercial health benefit plan,” according to the UHCCF website. The site also says:

Children who have medical needs are sometimes not insured comprehensively to provide coverage for all of their medical treatments. There are few places for families who have gaps in their commercial health benefit plan coverage to turn to for funding medically necessary services for their children. Children may go without necessary treatment, or, they receive the care and families assume a large amount of debt. The Foundation understands these needs and is willing to help fill this void.

To be eligible, applying families must meet a strict criteria. For all the details, visit http://www.uhccf.org.

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Along with her daughter Megan, FightSMA president Martha Slay is featured on the cover and inside the May issue of Richmond Parents Monthly. With this month’s edition focusing on Mother’s Day, the magazine highlights Martha’s efforts to raise research funding and awareness of Spinal Muscular Atrophy (SMA) and how this work lead to the creation of FightSMA’s Fighter Mom program.

From the article:

Twenty-two years ago, Martha Slay became a mom. And about 21 years ago, she became a Fighter Mom.

Although those weren’t the words she used at the time, that’s when her son Andrew was diagnosed with spinal muscular atrophy, or SMA, the number one genetic killer of babies in the U.S. Martha felt compelled to do something. That something was Andrew’s Buddies, an organization she and her husband Joe founded in 1991 to raise money for SMA research and spread awareness of the disease. Over the past 17 years, the organization has evolved into FightSMA, with chapters across the county that have raised more than $5 million for research.

FightSMA also supports parents whose children have been diagnosed with SMA, helping them becomes advocates—fighters—for their children.

About three years ago, recognizing that mothers of children with other diseases or difficulties were contacting FightSMA for advice and encouragement, the organization created the “Fighter Mom” program.

“We were blown away with what moms were sharing” about becoming activists, said Martha. That collective wisdom is gathered into the Fighter Mom manual. Meant to help parents harness their passion to protect their children, the book is full of nuts-and-bolts advice about raising funds, working with researchers and talking to congresspeople. More information and a link to order the free manual is at www.fightermom.org.

The read the entire article, visit the Richmond Parents Monthly website.

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Genzyme Genetics, a part of Genzyme Corporation, has announced that “it is the first national laboratory specializing in reproductive testing to provide population carrier and prenatal diagnostic testing for spinal muscular atrophy (SMA)….This test will enable couples who are planning a pregnancy, or who are already pregnant, to determine if they are carriers and at risk of having a baby with SMA.”

From the company’s press release:

The Genzyme Genetics SMA test offers results in approximately 7 to 11 days and is expected to have an approximately 94 percent detection rate of carriers overall and approximately the same detection rate for the most common and severe types of SMA in affected fetuses. SMA is characterized by progressive muscle degeneration of motor neurons, resulting in severe muscle weakness. In 60-70 percent of cases, children with SMA die from respiratory failure by age two.

Greater than 94% of SMA carriers have a deletion of one SMN1 gene. Genzyme’s new test utilizes quantitative PCR (polymerase chain reaction), a technology that can determine the number of SMN1 genes. An individual with one SMN1 gene is a carrier of SMA; a fetus with no SMN1 genes will be affected with SMA. SMA is caused when both parents have only one SMN1 gene. Approximately one in 41 people is a carrier of the SMA-causing gene, resulting in an incidence rate of 1 in 6,000-10,000 births. If both parents are found to be carriers, prenatal diagnosis by chorionic villi sampling or amniocentesis is available.

Genzyme Corporation was a sponsor of the 2007 FightSMA Annual Conference and is scheduled to participate in the 2008 conference next week.

To read the full press release, click here.

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Diagnosed with type 2 spinal muscular atrophy (SMA), Ofek Cohen is used to being limited by his physical condition. “I’m not able to do much on my own,” Ofek says. “I’m very weak. I can’t walk or write or pick things up. I need help doing everything.”

But he doesn’t let this stop him. At 16 years old, Ofek is a junior in high school, a member of the National Honor Society, and a chess champion. Although Ofek is unable to move the chess pieces himself and must rely on his opponent for help, he has won his county’s chess tournament for the second year in a row. Bill Wardle, the tournament sponsor, says “Ofek is good at analyzing the situation when he plays chess…He rarely makes a mistake.”

To read more about Ofek and his battle with SMA, click here.

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Natasha Wood’s one woman tour is rolling toward its completion. You may recall Natasha as the guest on the first episode of Fighting Back Podcast. Back then Natasha was launching the tour of her autobiographical one-woman show, Rolling with Laughter, with a series of dates in North Hollywood, California. Natasha has Spinal Muscular Atrophy Type II and uses the show to tell about her remarkable life. Almost a year later, the tour’s final destination is in view — a single show in London, to benefit SMA research. The proceeds from the show will go to the Jennifer Trust, a UK nonprofit.

The performance will be on March 30 at Her Majesty’s Theater in Haymarket, London. For more on Natasha and for ticket information, please visit RollingWithLaughter.com.

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Researchers at the University of Deleware are working to develop robotic vehicles that they believe could help young disabled children by allowing them to explore their environment. According to Cole Galloway, a physical therapy professor, this mobility is important to a child’s development because “as soon as you’re reaching, as soon as you’re walking, your cognition explodes.” This suggests that many disabled children may be missing out developmentally because they often are not given a power-chair or other powered mobility option until the age of 3 or later.

Speaking from experience, Ruth Everard of Cambridge, England expressed her support of the Delaware researchers. Ruth has type 2 spinal muscular atrophy (SMA) and was less than 2 years old when her father designed a power chair for her that lead to the creation of Dragonmobility Ltd, which now produces multiple kinds of power chairs for individuals of differing ages and abilities. Ruth hopes that the work in Delaware will add to the “existing body of knowledge about mobility and the developmental needs of children.” She said, “I find it tiring that I’m still being told it’s cutting edge, and I’m 28.”

To read the full article, click here.

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The Washington Times recently ran a lovely piece about the Lee Family of Ellicott City, Maryland. Emily Hope Lee, the third daughter of Nathan and Diana Lee, has spinal muscular atrophy (SMA). The article describes some of the struggles that the Lee family has faced in their battle with SMA and provides a little insight into how their faith has impacted their fight.

Here is an excerpt from the article, “Hope is her middle name” by Julia Duin:

Emily Lee, with her large brown eyes, pale ivory skin and two small jet-black pigtails, has clung to life for 2 years and 5 months.

She cannot crawl, sit up, move her head or even swallow because of spinal muscular atrophy (SMA). The genetic disease that prevents the production of muscle protein kills half of the affected children by the age of 2. The rest die by their teens.

Her family is just grateful that Emily has lived to see her second Christmas. The child lives between life and death, enjoying “Veggie Tales” and “Dora the Explorer,” baths and van rides to her church, Columbia Presbyterian, where her parents sit in the back, ready to dash out the door if Emily’s health were to fail.

To read the full article and to see a slideshow of pictures, click here. To keep up with the Lee Family, visit their website www.hopeforemily.com.

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Hannah’s Buddies, the Tampa, FL chapter of Fight SMA, has set the date for the 2008 Hannah’s Buddies Charity Golf Classic. The ninth annual event is a fundraiser for spinal muscular atrophy research, and will take place on February 8 and 9 in Orlando, FL. It features a golf tournament during the day, a silent auction in the evening, and a concert at night. Already lined up for the concert is John Bell, lead singer of the band Widespread Panic (seen to the left with his goddaughter, Hannah from Hannah’s Buddies). Other musical acts are to be announced.

Here’s the preliminary schedule for the day:

February 8, 2008 at 12:30 p.m. - Shotgun start for the golf tournament at the Grand Cypress Golf Resort in Orlando, FL

February 9, 2008 at 4:30 p.m. - Dinner and silent auction at the House of Blues in Orlando

February 9, 2008 at 8:00 p.m. - John Bell and Friends Benefit Bash

Tickets for the concert are available at the House of Blues.

Check the Hannah’s Buddies chapter page for more details, coming soon!

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The outpouring of support for Callum Robbins, son of musician and founder of the band Jawbox, J. Robbins, continues to flow.  Callum, who will be two years old in January, has Spinal Muscular Atrophy Type 1.  This comes this week from music magazine Harp:

This December, cellist Gordon Withers of Boston indie group Betwixt will also add to the cause with Jawbox on Cello: A Benefit for Cal Robbins, a collection of 12 Jawbox songs performed by Withers. The album will be released digitally through Ioda on Dec. 18, is also available on Withers’MySpace page and can be streamed on his Virb page. All proceeds will benefit the Cal Robbins Care Fund.

Read the Harp article here.  To read more on Callum, visit the blog J. Robbins set up for him.

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The Savannah Morning News ran a great story yesterday about Skylar Swanson and her family of Richmond Hill, Georgia. After she and her twin sister Cassie were diagnosed with Spinal Muscular Atrophy ten years ago, Skylar’s family started SMA Angels Charity. Representatives of SMA Angels Charity, including the organization’s president and the twin’s grandmother Anne Meguiar and Board of Directors member Bubba Summerlin, have repeatedly joined FightSMA for its Annual Conference in Washington, D. C. and have met with Georgia’s Congressional representatives on issues including the SMA Treatment Acceleration Act.

From the article:

Butterflies follow 10-year-old Skylar Swanson.

They perch on her wheelchair, her suction machine and oxygen tube. Some even land on her strawberry blonde hair, on the tip of her finger or near her yorkie who rides on her lap.

The Richmond Hill fifth-grader, whose muscles are so weak she can’t walk or hold her head up, has a simple explanation for the butterflies.

Skylar says her twin sister, Cassie, sends them to her from heaven. Skylar’s identical twin has become her guardian angel.

When Cassie died last June, Skylar didn’t know a day without her twin.

The two girls were born with spinal muscular atrophy, an inherited neuromuscular disease that’s the No. 1 genetic killer of children younger than 2.

Up to one in 6,000 children are born with the disorder. Many are unable to stand, walk or even breathe without assistance.

The twins’ parents, David and Dana Swanson, had a choice: provide respiratory aid and ongoing, noninvasive care to keep the twins alive.

Or do nothing, beyond keeping the girls comfortable without breathing assistance, knowing the twins would die sooner.

They chose to fight for life.

To read the entire article, visit click here. Also, mark your calendars for SMA Angels Charity’s 10th So Many Angels Ball being held November 17th at the Savannah International Trade & Convention Center.

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