Support for SMA

Today, you will not be getting my usual senseless banter but rather a topic very close to me; Spinal Muscular Atrophy (SMA)

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.

OK, now you have a general idea about the terrible disease, now let me share a couple of stories.

My personal interest in this illness is that it has afflicted one of the most special people in my life; my nephew Matthew.  Matthew was diagnosed in December of 2009 (December 16 to be exact because you never forget dates like that) at 8 months of age.  Initial reports from specialists was that Matthew may have just a few months to live.  Naturally, our family was devastated, but we pressed on.  My sister and her husband sought out every possible answer to, at the very least, "help" Matthew's condition.  But odds and statistics were not favorable.  Today, we are blessed to report that Matthew is holding his own.   A new medication is showing great signs of improvement and we all do our best to remain hopeful and pray for a miracle.

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. 

You see, Coby's incredibly brave and strong parents, Lori and Dave (whom I have never met) have decided to chronicle Coby's struggle through the most powerful communication tool at our disposal; Facebook.  This decision has allowed hundreds, possibly thousands, of people to gain an understanding, interest, and sympathy for not only Coby, but for SMA.  The buzz around the internet has been just amazing.  In most certainly the darkest hours of their lives, the Kulis family has decided to not only just be great parents, but powerful advocates and spokespeople for this little known disease that is taking lives like Coby's and Matthew's everyday.

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
Lawrence, MA
7:00PM - 2:00AM

http://www.fsma.org/
http://www.facebook.com/home.php#!/event.php?eid=124210054318829