Wednesday, 13 May 2009

Something you can DO - in memory of Georgia

Often after hearing of a tragic death, we wonder how we can help. If we have not experienced a similar loss we often do not know what to say or do to be of some comfort or help to the grieving family.

Well, I know of something you can do for Georgia's family! It doesn't matter if you knew her or not (I only knew of her through a mutual friend), if her story has touched you in any way, here is where you can make a tangible difference.

Georgia died from Spinal Muscular Atrophy (SMA) - it is the #1 genetic killer of children! Bill & Victoria Strong's daughter Gwendolyn was diagnosed with SMA in spring 2008. So far, she is still fighting it. Her parents started the Petition to Cure SMA as something they could do, a grassroots effort to drum up support for the SMA Treatment Acceleration Act. It is too late to help Georgia. It's very likely too late to help Gwendolyn. But it's not too late for future SMA generations.

About SMA
* SMA is the #1 genetic killer of young children.
* Fewer than 1 in 35 people unknowingly carrying the gene responsible for SMA.
* 1 in every 6,000 babies is born with SMA; SMA prevalence is comparable to ALS and Cystic Fibrosis.
* SMA impacts the ability to walk, sit, stand, eat, breathe, and swallow. SMA does not impact the mind, and children with SMA are bright and social.
* There is currently no treatment and no cure for SMA, but there is HOPE!
* The NIH has selected SMA as the disease closest to treatment of more than 600 disorders.
* Leading U.S. researchers, including Nobel laureate James Watson, have stated that a viable treatment for SMA is possible within 5 years IF they are provided the proper resources.

So, please - if you're wondering what you can do.... Please sign the petition (you, your spouse and all members of your household can sign).

For Georgia.

For Gwendolyn.

For all past, present and future SMA sufferers.

1 comment:

Kristen said...


I have been checking in quite regularly with your blog but I tend to be a 'silent' follower. Today however, I noticed that Georgia was listed on the side and clicked. I had a chance to read all that you have done for our family and those that continue to fight and sometimes lose their loved ones. While words will never do, I just wanted to say thank you from the bottom of my heart. Mike and I continue to be humbled by the love that we are surrounded by and can only hope by learning from Georgie as well as people like yourself that we will in time be able "pay it forward".

Love to you and yours,



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