Hello..My name is Stephen Taylor and I am from New Bedford Massachusetts. I am fortunate and grateful to have been bitten by the Ultrarunning bug. I completed my first 50 mile Ultra in September of 2009(North Face Endurance Challenge) and I am looking forward to participating in the 2010 Western States 100 Ultramarathon, ws100.com. The Western States 100 takes place this June 26th and starts at Squaw Valley Ca., and meanders 100 miles through the Sierra Nevada mountains. It is hot, it has over 40000 feet of elevation and descent, and I can't wait to torture myself.
This wouldn't be possible without one special person entering my life. A little guardian angel. It is said that god puts special people in your life when you least expect it and that he works through these people. My little guardian angel is Owen Simmons. Owen is the son of Andrew and Heather Simmons and has a brother, Adyn. Sadly, Owen passed away this November at the age of 23 months. Owen was diagnosed with SMA(Spinal Muscular Atrophy). SMA is a terrible disease which effects thousands of infants and their families.
- SMA is the number one genetic killer of infants and young children
- SMA is degenerative and terminal, often called the Lou Gehrig's disease of babies
- SMA eventually impacts every muscle in the body, incliuding the ability to eat, walk, stand , breathe and even swallow
- 1 in 40 americans or roughly 10 million american unknowingly carry carries the gene responsible for SMA
- SMA is pan-ethnic, does not discriminate based on race, gender or ethnicity.
- There is no treatment or cure, though the National Institutes of Health selected SMA closest to treatment and or cure
- Researchers estimate that a viable treatment and or cure is attainable within 5 years, provided adequate funding is provided