Teagan and I have had the honor of calling
Getty and her mom friends for a little while now. We have never met in person but hopefully one day we will. We have grown closer via the internet/e-mail then some people grow face to face. I am already forever thankful for their friendship and can´t wait for the day Teagan & Getty dress up in their tutus and party. When we got the good news about an album coming out that would help raise money for the official
Getty Owl Foundation we jumped on the chance we were given to tell people about it.
The album is Sweet Water Child--
Lullabies for Getty by the Damnwells. Tuesday, April 5th (tomorrow) is the official drop date of the
album. The idea is to skyrocket this album so it shows up on the big Itunes kids charts because the more people that buy the album the more money goes to the Getty Owl Foundation. The
Getty Owl Foundation is raising money for
SMA (Spinal Muscular Atrophy) research. The cure is so close and is within arms reach as long as the researchers have enough money to keep researching.
So, if you can help us out and buy the album tomorrow all of the SMA warriors would appreciate it (I have recently been bestowed the honor of being called a SMA warrior and I wear the badge proudly).
For those of you who don´t know about SMA here are some facts about it (taken from Gettyś blog). And don´t worry I had never heard of SMA until I happened upon Getty Owlś blog.
Spinal Muscular Atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness. Infants, like Getty, with SMA Type 1 (SMA1), 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 SMA1 is seldom longer than 2 – 3 years.
- SMA is the #1 genetic killer of young children.
- SMA is estimated to occur in nearly 1 out of every 6,000 births.
- 1 in every 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 in as little as 5 years – 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.
Spinal Muscular Atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness. Infants, like Getty, with SMA Type 1 (SMA1), 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 SMA1 is seldom longer than 2 – 3 years.
- SMA is the #1 genetic killer of young children.
- SMA is estimated to occur in nearly 1 out of every 6,000 births.
- 1 in every 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 in as little as 5 years – 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.
