Cure SMA

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

Hi, I’m Dana and this is my friend, Ben. 

I’m 10, and I’m the founder of Cookies4Cures, a nonprofit that raises money for research into rare pediatric diseases. Ben is my super friend. He has a disease called Spinal Muscular Atrophy (SMA). 

^ This is us meeting Lenny Kravitz!!!

SMA is a degenerative disease. That means it gets worse as Ben gets older. Kids with SMA usually have shortened lifespans, but just because that’s how it’s been in the past doesn’t mean that’s what will happen to Ben. I am fighting to give Ben his best chance!

^ I was a Global Genes Champion of Hope in 2019 and Ben got the same award in 2015!

Research is amazing, and scientists have already made great advancements in treating SMA. That’s why Ben and I are teaming up with Cure SMA, the leading SMA organization in the U.S., to help fund a research grant that will advance scientific knowledge of this disease and hopefully lead to new treatments that will benefit Ben and the thousands of people in the world like him. 

Sometimes people ask me why I’m friends with Ben since he is a lot older than me. Ben is a super fun and friendly guy. It would be hard not to be friends with him. Also, he is a math genius and I love math, too. I really look up to Ben, and I hope I can be like him one day. 

The research to help Ben is really expensive. Cookies4SMA needs to raise $50,000, which will go a long way in funding an important Cure SMA research grant. Will you help us?

We raise most of our money by baking cookies. Lots and lots and LOTS of cookies. Over 17,000 cookies so far!

^ These are a few of our cookies.

Sometimes we set up cookie pops-ups outside our local grocery store, Lucky’s Market, or pull our cookies around the block in our red wagon. Other times, we mail our cookies all over the country. We even pack our cookies into suitcases and take them on airplanes to set up cookie stands in other cities. 

^ This is one of our cookie pop-ups.

We also have a dedicated community of people on GoFundMe who follow our story and support us. 

Everything we have accomplished has been because of our amazing community of bakers, sellers, and supporters. Thank you for being a part of our story!!!

With hope, butter, and love,
Dana, Ben, and the Cookies4Cures kids


PS. Here are our other campaigns.
Read all about MCTO and our friend Sophie at Cookies4Sophie !
Read all about PANS and our friend Ollie at Cookies4PANS !
Read all about Batten and our friend Mila at Cookies4Mila !

Event In honor of Sarah.

The world has been blessed for 13 years with her strength and determination to  finding a cure to Spinal Muscular Atrophy. This disease affects 1 out of every 6000 births worldwide.

At the age of 2, Sarah unfortunately was diagnosed with the progressive form of SMA type III. Thanks to all the generous donations made to SMA foundation the research has rapidly progressed. Cure SMA is committed to supporting the most promising SMA research, with over $62 million funded in our 30-year history.

Each year, Cure SMA issues requests for proposals in three major research areas:

Basic research, to investigate the causes and biology of SMA, revealing new and more effective ways of making drugs. 
Drug discovery, to convert these basic research ideas into new drug candidates. 
Clinical care, to improve the quality of life for SMA patients today.
2003-2006: Cure SMA made over $500,000 in seed grants to fund the therapeutic approach that led to Spinraza. On December 23, 2016, after 10 years of research and development, the FDA approved Spinraza for SMA, making it the first-ever approved therapy.

Let’s do this together! 15th of September 2017 - Bandits’ Grill and Bar Park City Utah would hold a charitable dinner event with all donations going to cure SMA (free bbq buffet, 5pm - 8pm.)

All the profits from the restaurant will be donated to the cause cure SMA on that day. 11am - 9pm. The next milestone to reach is a breakthrough gene therapy that will cure young kids. Stop the progression of the disease and potentially reverse some of the conditions for older people. 

Please join Sarah, her family, friends, and medical team on September 15th at Bandits Grill in Park City to raise money to cure this disease once and for all.