What is SMA, you ask?
Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.
WHO IS AFFECTED?
- SMA is one of the most prevalent genetic disorders.
- One in every 6,000 babies is born with SMA.
- SMA can strike anyone of any age, race or gender.
- One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.
- 7.5 million Americans are carriers.
- MA is the number one genetic killer of children under the age of 2.
However, SMA is defeating one of it's very bravest soldiers; Coby Quinn Kulis. Coby was diagnosed just months after he was born is now only 5 months old.
During his short life, Coby has been given the very appropriate nickname 'Superman' by his Mom; and he continues to earn that title every day.
A few weeks ago, it appeared Coby had just days, if not hours, remaining; but he has continued to battle - and in this process he has educated and inspired people across the web.
On Friday, March 4th, we are excited to be hosting a fundraiser to benefit Families of Spinal Muscular Atrophy (FSMA) - a non-profit organization dedicated to helping these families dealing with these overwhelming and, frankly, unfair circumstances.
'Shamrocks for SMA' is a St. Patrick's Day-themed event dedicated to raising awareness, compassion and funding; for which this disease so richly deserves. If you can support this event, my sister, the Kulis' and so many other families would be so very thankful.
Shamrocks for SMA
Friday, March 4, 2011
The Claddagh Pub
399 Canal Street
7:00PM - 2:00AM