Avery's Bucket List - 1111 Challenge
It’s taken over 7 years since Avery’s death for us to be able to write this – the words flowed so freely when Avery was alive – they disappeared when she physically left our side.
DNA is a crazy thing – because of it, your child might be born with blonde hair and blue eyes, brown hair and green eyes, or quite possibly they’ll be born with a debilitating genetic disease such as Spinal Muscular Atrophy (SMA) – the #1 genetic cause of death for infants.
Our daughter Avery was born with SMA on Nov 11, 2011 and she passed away due to SMA on April 30, 2012. Avery was only 5.5 months old at the time of her death, but she garnered worldwide attention via her blog, Avery’s Bucket List. Avery inspired us and countless others while bringing much needed awareness and funding towards fast-tracking a promising and potential cure for SMA (see: Zolgensma). We are often left wondering what Avery's life would have looked like had she made it to her 1st birthday and beyond. How many more smiles, snuggles, and other joyous moments would we have shared together? How many more people would Avery have taught about SMA and the fact that approx. 1 in 50 people is a genetic carrier for it? Who else might Avery have helped to ask their doctor questions and learn more about their genetic makeup? And who else's life, aside from ours, might Avery have impacted for the better?
August is SMA Awareness Month and we are hoping Avery’s magical luster still shines bright in all of us and will inspire you to help Cure SMA. This is why we are asking you to:
DONATE $11 or any amount you are comfortable donating to help Cure SMA.*
NOMINATE 11 of your friends by e-mail, text, or tagging them on social media and ask them to do the same while we all...
ADVOCATE for awareness for SMA and other neuromuscular disorders by sharing this publicly.
*Your donation is going to help Cure SMA, a 501(c)(3) charitable organization and is tax deductible.
Why $11, 11 nominations, and a goal of $111,111? Avery’s birthday (Nov. 11th, 2011) of course. Haven’t been nominated? No need to wait; nominate yourself by donating and then nominating 11 others to do the same! Can’t afford to donate? Don’t let that stop you from nominating others and advocating to help Cure SMA by sharing this – you never know what impact your sharing this might have on someone else.
Thank you. Thank Avery.
-Avery's Mom & Dad-
Link to Avery's Bucket List - http://averysbucketlist.org/
Link to Cure SMA - http://www.curesma.org/ - Cure SMA is dedicated to the treatment and cure of spinal muscular atrophy (SMA), the number one genetic cause of death for infants. We fund groundbreaking research and provide families the support they need for today.
#1111challenge
#DNA2CureSMA
#DNAtoCureSMA
#doitforAvery
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^ This is us meeting Lenny Kravitz!!!
^ I was a Global Genes Champion of Hope in 2019 and Ben got the same award in 2015!
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