Thursday, September 16, 2010

SMA what does it mean?

Today is the biggest Blog Post Party ever! Well, I wanted to be a prat of that wouldn't you? We all want to belong right? Well, for some people SMA means belonging to a group, a group of people in the fight of their lives..... a fight to save their incredibly beautiful children.

SMA (spinal muscular atrophy) is a disease you see. A disease that not enough people know about. Being a part of this group is not always fun, exciting, or where you want to be. You see these are the facts about SMA

SMA is the leading genetic killer of infants.

SMA steals these beautiful children's ability to move.

SMA robs children of the ability to cough or breathe unassisted.

SMA affects seemingly perfect babies.

SMA is an orphan disease and due to lack of future profits drug companies are not interested in spending research dollars.

1 in 40 people carry the gene for SMA!

SMA steals over 90% of its victims before they turn 1 year old.

The National Institute of Health says that SMA is the closest neuro muscular disease to treatment or a cure.

SMA does not affect the mind. These incredible children are bright and love to interact and play.

SMA is causing families to band together in a way that many families would love to.

SMA families have incredible tenacity, they will do anything to raise funds and awareness to save their children and thousands of others....

My introduction to SMA was not through one of my children but through a blog post, it was asking for votes to get funds for research. The little video clip that came with it changed my life..... Through our own loss of a child my heart was broken for these families that are given such a diagnosis. To have no choice but watch the child you love more than your own life suffer and die. I knew at that moment our little shop needed to become involved. I knew that if we all became involved and we all spoke about SMA that changes would happen and cures could be quicker. Funding for this disease should not fall on the shoulders of sweet families living in the moment with their precious children.

So, our little store has pledged to walk alongside families fighting this monster. We will continue to donate money, raise awareness, and celebrate the lives of these children! We hand out magnets, bracelets, and sell butterflies. Oh, these very special butterflies with incredible Gwendolyn's name on them. We created this special design as a symbol of hope. As a reminder that with funding comes a cure that will allow these children to move and jump just like a butterfly bursting out of its cocoon. These special butterflies are little pieces of art. Each one is designed with hand painted threads, hand blown beads and colors that will knock your socks off. The sale of each of those gives a 60% return to the Gwendolyn Strong Foundation for research. One of the ways we can continue to raise finds and awareness.

Watch the clip and see how it moves you!

Here is a Gwendolyn butterfly, isn't it beautiful?!?! If you would like one just go to the Bebessentials site and pick one out. Then sit down and think of a way YOU can make a difference.

You can also go to this link and vote for GSF to receive a 20K research award! Please copy and pste the link, I couldn't get it to work in link form.... Just a few clicks for research funds for SMA.