Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Wednesday, September 15, 2010

It's a Blog Party!

Okay, so I'm one day early but this is the only way that I am going to get it done. We're having a blog party and you're all invited! Today, September 16th, we are asking all of you fellow bloggers, facebookers, tweeters and whatever else you use to communicate with the world to join us. What's it all about? Well it's rather simple. Help us to raise awareness about SMA.

Here are a few facts:

SMA Statistics

  • 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.
What can you do to help? Lots of things. One of the easiest is to simply post some facts about Spinal Muscular Atrophy on your blogs, or on facebook. You can also help the Gwendolyn Strong Foundation win $20000 by clicking here. How about wearing an ivory ribbon and telling people about SMA when they ask what it's for. If you live here in the city please join us on October 3rd for Georgia's Journey of Hope. You can have fun with your family and friends and help raise funds towards finding a cure.

Today as I handed out some of our flyers to families at school one of the mom's had the courage to admit that she still didn't know what SMA is. She knows that we have a little angel named Georgia that passed away but doesn't understand why. I can assure you that she now knows a lot more about SMA. : )

So can you help me out? Do you have a blog? Please consider sharing some information about Spinal Muscular Atrophy. Don't have a blog? How about just posting some information on facebook.

"As long as we have faith in our own cause and an unconquerable will to win, victory will not be denied us."
Winston Churchill

Love to you all,

Kristen

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