BENEFITING: GETTY OWL FOUNDATION
EVENT DATE: Nov 14, 2015
Our family has a heart for SMA (spinal muscular atrophy) and the race to find a cure. Mostly because of one sweet little lady, Getty and her amazing parents Kate & Mark. Over the years Kate and I have become across the coast friends and can't wait for the day our sweet girls get to meet face to face. They will all be in pink tutus with their owl hats on, of course.
In 2013 I trained really hard for my first marathon and unfortunately was unable to finish and had to be brought in at mile 16. The point of that marathon was in to raise money towards SMA research. This year I'm trying again and have all the plans in the world to beast it this time. Thunder Road I'm coming for you!
If you'd like to find out more about SMA, how to give money towards the research of a cure or how to do your part just visit theGetty Owl Foundation's site.
For those of you who don't know what SMA (Spinal Muscular Atrophy) is I have borrowed some information from the Getty Owl Foundation's site. The numbers are incredible.
Spinal Muscular Atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness. Infants, like Getty, with SMA Type 1, the most severe type of SMA, are born with very little muscle tone and weak muscles. They develop feeding and breathing problems as the weakness gets worse over time. The weakness eventually becomes severe.
There is no cure or treatment for SMA. The lifespan with SMA is seldom longer than 2 years.
SMA is the #1 genetic killer of young children.
SMA occurs in nearly 1 in 6,000 births.
1 in 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
Researchers estimate that a viable treatment and/or cure is attainable IF provided adequate resources.
The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.
SMA does not affect the mind.
What are the different types of SMA?
Individuals with SMA are commonly divided into 4 or 5 types. The 4 or 5 types are based upon strength. Each “type” is not a separate disease, but serves as a convenient shorthand when discussing the severity of SMA.
Type 1: This is the most common and severe type of SMA. People with Type 1 cannot sit up without support and are sometimes called “non-sitters.” The average life expectancy with Type 1 is seldom over 2 years. 60% of SMA births are Type 1.
Type 2: People with Type 2 can or have been able to sit up but not stand, and they are sometimes called “sitters.” The life expectancy with Type 2 is typically over 2 years. 70% of Type 2 patients are alive at age 25. 27% of SMA births are Type 2.
Type 3: This is a milder form of adult-onset SMA. People with Type 3 are able to stand and walk, but lose that ability over time. They are sometimes referred to as “walkers.” The life expectancy with Type 3 is often not affected. 12% of SMA births are Type 3 or 4.
Type 4: This is the mildest type and is typically adult-onset SMA. People with type 4 can walk, and that ability is not lost. The life expectancy with Type 4 is often not affected. 12% of SMA births are Type 3 or 4.
Type 0: Some refer to Type 0 as a more severe form of Type 1. The age of onset for Type 0 is prenatal and the average life expectancy is less than 6 months.