WHAT IS SMA?

• SMA is the #1 genetic killer of children infants and toddlers.

• Spinal Muscular Atrophy is a muscular disease passed on genetically to children by their parents

• 1 in 40 people are a carrier of this recessive SMA gene (Approximately 7 million American) most people unknowingly.

• Both parents must carry this recessive SMA gene in order for the child to be affected

• When both parents are carriers there is a 1 in 4 chance that their child will have SMA

• 1 in 6,000 births are afflicted with SMA – that’s up to 1,000 new babies each year

• SMA does not affect the child mentally – they are average to above average in intelligence.  It affects muscular development. 

• There are 4 different types of SMA – Type 1, Type 2, Type 3 and Adult Onset

• The earlier the symptoms are noticed, the more severe the type of SMA. 

• Type 1 is the most severe form - children lose or never gain the ability to walk, swallow, hold their heads up, etc. – children are at a constant risk of respiratory infection and pneumonia which usually takes their life by age 2.

• It sometimes is referred to as the Pediatric version of ALS “Lou Gehrig’s Disease”

IS THERE HOPE?

Absolutely!   They have already cured SMA in mice!  They know what causes it and are currently testing compounds to find the one that will work with humans with the most safety.   Unfortunately, scientists say only adequate governmental research funding stands in the way of a chance at life for the thousands of children afflicted with the disease.

NEVER HEARD OF IT?

No, neither did I until my son was diagnosed with it.   There aren’t many big celebs out there spreading the word.  Howie Long is the honorary chairperson for Andrew’s Buddies – Fight SMA.   Thanks Howie!!  Gary Sinese (you know, Captain Dan in Forrest Gump) and Jeff Perry (appeared on ER, NYPD Blue) have also teamed up to promote SMA.  Way to go guys!  But we still need your help.  Even if you just tell one person about SMA - alright, maybe more than 1 :o) – it would be great.   We need to bring awareness so that we can get our children the help that they so desperately need.