Saturday, August 2, 2014

August is SMA Awareness Month & the 3rd Annual brAvery Run!

Please share Avery's story by updating your social networks, e-mailing all of your contacts, talking to your friends/co-workers, and definitely tell your Ob/GYN about Avery's story and maybe they'll routinely start offering SMA testing.  If we can help save a few of Avery's friends and their mommy, daddy, and loved ones from SMA, then Avery's life, while cut short in time, will continue to be fulfilling in stature.

We're not sure why August was selected as Spinal Muscular Atrophy (SMA) Awareness Month, but we are certainly happy SMA has it's own awareness month!  With that said, SMA is a 24/7/365 disease and it does not take off the other 11-months of the year.  So while this is officially SMA Awareness Month, we'd encourage you to continuously educate yourself and others about:

2. How can prospective parents get carrier tested?

3. What are some events in my area so I can support local children/families with SMA?  One upcoming event everyone can participate in from near or far is the 3rd Annual brAvery Run (only two weeks away).  We encourage you to sign up for the run in Fredricksburg, TX or join us by participating in your hometown and do the virtual run.

 4. Where can I donate to help fund research for a cure through FightSMA and/or through Sophia's Cure Foundation to continue funding Dr. Kaspar's Gene Therapy program (which back in June was officially introduced for the first time into a child with SMA - updates will be provided as we learn more)!

Lastly, as always, we want to continue to thank everyone for loving Avery and supporting us along the way.  We are forever grateful.

Don't forget to share Avery's story and continue to follow the stories of children & families currently battling SMA!  The more people aware of SMA the less likely a family will receive a diagnosis of SMA and the more likely there will one day be a cure for children currently battling SMA!

1 comment:

  1. I just want to let you guys know how much your family continues to inspire me. I remember being so touched when you told Avery,"you can chose to live life like you're dying; or die living life!" (I've tried to adjust my own life to reflect that view!) Your faith and strength shine through...Such a beautiful legacy for both your children! God Bless and Happy Days!!!