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