Dr. Alex MacKenzie is the director of the Children’s Hospital of Eastern Ontario Research Institute and co-chair of FightSMA’s Scientific Advisory Committee. In the March issue of the journal Nature Biotechnology, Dr. MacKenzie discusses the recently publicized efforts to develop a cure for spinal muscular atrophy (SMA) using gene therapy.
To read Dr. MacKenzie’s article, click here.
Satori Lewis is like a lot of girls her age, with one major difference: she has spinal muscular atrophy (SMA) type 2, the intermediate form of the genetic, neuromuscular disease. Because the muscle weakness caused by SMA, Satori has developed scoliosis and will soon be heading to California for spinal surgery. As her mother Melissa describes it, “they will open her back from the neck all the way down, insert 2 titanium rods, one on either side of her spine, wire the whole thing up and place donor bone in between all the vertebrae. Eventually it will all grow together “fusing” her spine into one long bone.”
After the surgery, Satori will have remain in the hospital for 7-10 days, but her mom has a plan to try to help that time pass better. Melissa has put out a request for postcards from around the US and the world to be delivered during her daughter’s hospital stay. The plan is to surprise this straight-A student with a new atlas where she can track where all the postcards originate. The hope is that Satori will get two things out of this: global well-wishes and a geography lesson.
For information about how you can send a postcard to Satori, click here.
A look at three people who were recently profiled in their local newspapers and who are living with spinal muscular atrophy (SMA).
Kyle Vezzaro
Kyle Vezzaro loves basketball. He loves it so much that in addition to his college courses, he has two basketball-related jobs: team manager for the Carleton University men’s basketball team and assistant coach for the Ottawa Guardsmen boys team. He says that the players “often do a double-take” at first, but that is probably due to the power wheelchair that Kyle depends on to get around. He has spinal muscular atrophy (SMA) and while the muscle weakness it causes may slow him down, it hasn’t stopped him. With regards to coaching, Kyle says, “I just need to find new ways to explain things. But that’s the fun part of the game.”
Click here to read the article about Kyle Vezzaro.
Yew Leong
Yew Leong is not an average high school student. Born in Singapore, his family lived in Australia and in New Jersey before settling in Colorado. He excels in the advanced level classes of his school’s International Baccalaureate Program. He did an internship with the National Oceanic and Atmospheric Administration. And, he was diagnosed with SMA when he was just six months old. This means that Yew must rely on assistance – both human and machine – to complete daily tasks and to fulfill his larger goals. Yew wants to attend Berkeley for college and study biochemistry in hopes of someday finding a cure for his disease.
Click here to read the article about Yew Leong.
Sarah Cheung
When she was diagnosed with SMA at nine months of age, Sarah Cheung’s parents were told she wasn’t expected to live beyond the age of three. Now, she is finishing up high school and making plans for when she starts college in the fall. In between her duties as a volunteer tutor and her fundraising efforts to help send disabled children to camp, Sarah found time to serve as a Paralympic torchbearer. As Sarah Cheung puts it, “everything is possible. There are no boundaries.”
After their daughter Evie was diagnosed with spinal muscular atrophy (SMA), Jeff and Dee Horton perceived a lack of knowledge and awareness of SMA in their community and even among many doctors. Desiring to do everything in their power to help Evie and others like her, the Hortons founded Stop SMA, a non-profit dedicated to battling SMA.
Now, Stop SMA is in the running to raise $250,000 for SMA research through the Pepsi Refresh Project. As of today, Stop SMA sits in 4th place among $250,000 candidates, but they need to be one of the top two when the end of the month rolls around to qualify for funding. Supporters can help move Stop SMA up the list by voting each day in March and asking their friends and family to do the same.
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