Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!
This afternoon, the Recombinant DNA Advisory Committee (RAC) unanimously voted YES to Dr. Kaspar's Gene Therapy program moving forward to the FDA for final approval. This is one HUGE step forward towards curing SMA. Thank you to everyone who continues to spread awareness about SMA and who has made and continues to make donations in Avery's name towards finding a cure for SMA!
And a special thank you to the families who attended today's meeting. You all brought tears to our eyes and hope to our hearts.
Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be diagnosed with SMA, and the more likely there will be a cure for my friends who already have SMA!
This is a call for action for you to please help get The National Pediatric Research Network Act (NPRNA) passed by the U.S. Senate.
As to make this as simple as possible for you, at the end of this blog, there is a pre-written letter and a link for you to contact your state Senator asking them to please support this act. It would be a huge help to many current & future SMA children & families if you will simply copy & paste the letter and then send it to your senator. If you'd like to include any further information about how Avery or any other SMA child has affected your life, then please feel free to add to the letter as you deem appropriate. Thank you again for all of the support!
Brief Synopsis of The National Pediatric Research Network Act (NPRNA): The U.S. House of Representatives passed The National Pediatric Research Network Act (NPRNA), which promises to directly benefit the fight against SMA by supporting collaborative pediatric research including multi-site clinical trials for rare pediatric disorders like SMA.
Here's the letter you can copy and paste for email or fax:
Dear Senator (INPUT YOUR SENATOR'S LAST NAME HERE):
In memory of little Avery Canahuati who at 5 1/2 months old lost her life to SMA, and on behalf of families like mine across (INPUT YOUR STATE HERE) who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on Wednesday, September 19th, thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.
SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO), Whitehouse (RI), Begich (AK), Blumenthal (CT) and Kerry (MA).
This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.
We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across (INPUT YOUR STATE HERE). Thank you so much for your consideration.
THANK YOU FOR ALL OF YOUR CONTINUED LOVE & SUPPORT FOR AVERY, OUR FAMILY, and SMA CHILDREN & FAMILIES EVERYWHERE!
Don't forget to share Avery's story by following & forwarding her blog, following her on
Twitter (AveryBucketList) and Like her on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!
You can also download "Avery's Song" by Randy McLellan for only $0.99 cents using any of the following links and half of the proceeds will be donated to Fight SMA:
Please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!
The following update is from the FightSMA website: Legislation to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as spinal muscular atrophy (SMA) passed the U.S. House of Representatives on Wednesday with broad bipartisan support. The National Pediatric Research Network Act (NPRNA) promises to directly benefit the fight against SMA by supporting collaborative pediatric research including multi-site clinical trials for rare pediatric disorders like SMA.
You can also download "Avery's Song" by Randy McLellan for only $0.99 cents using any of the following links and half of the proceeds will be donated to Fight SMA:
Don't forget to share Avery's story by following & forwarding her blog, following her on
Twitter (AveryBucketList) and Like her on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!
Please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!
Being far from superstitious people or the type who get caught up in "numbers or signs", we have to admit, the update we are about to provide truly boggles our minds while bringing smiles to our faces and tears to our eyes.
Yesterday evening (August 18th), exactly 111 days after Avery passed away, we received a phone call from Vincent Gaynor with Sophia's Cure Foundation notifying us that the total amount of donations in Avery's name had just reached over $500,000. With the multiple matching donors, this means exactly 111 days after Avery passed away, she achieved her goal of raising the $1,000,000 ($1.5+ mil to be exact) necessary to fully fund the Phase 1 clinical trials of Dr. Kaspar's Gene Therapy program in an effort to cure Avery's friends with SMA. And as soon as the FDA gives approval, estimated to be in the early part of 2013, Dr. Kaspar can begin helping Avery's friends.
Thank you to everyone who donated $0.01 to $111,111.11 and beyond. Avery's goal could not have been achieved without you and we sincerely thank you from the bottom, middle, top, and all sides of our hearts! Please remember to continue sharing Avery's story, spreading her message about SMA to protect future children & their parents from SMA, and helping to fund a cure for Avery's friends still battling SMA.
And lastly, please remember that Avery's goal was to raise $1,000,000 towards a cure for SMA and then do it again...she's already met the first part of that goal and now she's half way towards doing it again. Once again, thank you for being a part of Avery's life and for continuing to be a part of her everlasting story.
Avery laughing upon being released from the hospital after her G-Tube surgery.
Items Avery Can Scratch Off Her Bucket List:
1. Raise $1,000,000 towards a cure for SMA and then do it again and again and again 2. Help fully fund Phase 1 of Dr. Kaspar's Clinical Trial
Don't forget to share Avery's story by following & forwarding her blog, following her on Twitter (AveryBucketList) and Like her on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!
Please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!
Last night the Sugar Land Skeeters went all out in honoring Avery with “A Day for Avery”. They had a heart wrenching video montage of Avery they showed before the game, videos about SMA & Avery's story in between innings, a balloon release for Avery, t-shirts & wristbands for sale, and they wore special Avery game day jerseys (see below), which they auctioned off during the game. So far they've raised over $14,000 with all proceeds being donated to Sophia's Cure.
This custom golf cart was donated by one of
Avery's SMAn's and is being auctioned off.
200 T-Shirts were donated and sold for $15
inside the Skeeters Fan Shop. They sold out
and immediately had requests for more.
Octavio Martinez, Avery's catcher, who after Avery
passed away inscribed Avery's initials, her birth date,
date of passing, and R.I.P. on his cap.
Thank you Davis family and all other families
who bid on a jersey and supported a cure for SMA!
Lastly, thank you to the Sugar Land Skeeters for everything and for all of the memories from Avery's first pitch and from last night. We appreciate everyone who attended the game last night in honor of Avery and in support of SMA Awareness and funding for a cure. Among the people in attendance last night, were many of Avery's SMAn's and family members, along with Nancy Burford (Avery's speech pathologist), Dr. Paul Minifee (Avery's glam-tube surgeon), Dr. Nancy Glass (Avery's anesthesiologist), and last but certainly not least, Savannah, one of Avery's friends came with her mommy & family.
Avery's friend Savannah with her family and
the Skeeters mascots.
Avery's SMAn's since Day 1.
Oh and in case you're wondering about the outcome of the game, the Skeeters won 4-3 in the 11th inning when the opposing pitcher uncorked a wild pitch while trying to intentionally walk the Skeeters' Ofilio Castro who happens to wear number 11. Considering Avery's birth date was 11/11/11, this brought chills and smiles to us all at the same time.
We miss you, we love you, and thank you for forever being with us.
Don't forget to share Avery's story by following & forwarding her blog, following her on Twitter (AveryBucketList) and Like her on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!
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