Avery's Bucket List: September 2012

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 link for you to contact your state Senator: http://www.senate.gov/general/contact_information/senators_cfm.cfm

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.

Sincerely,

INPUT YOUR NAME(S) HERE

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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!

http://www.facebook.com/AverysBucketList

https://twitter.com/#!/AveryBucketList

If there's anything you'd like to mail, you can send it to:

Avery's Bucket List

PO BOX #2849

Bellaire, TX 77402

You can click here to donate to FightSMA.org

You can click here to donate to Sophia's Cure.org

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:

Download Avery's Song on Amazon

Download Avery's Song on iTunes

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.

CLICK HERE TO FINISH READING THIS STORY

Avery laughing upon being released from the hospital after her G-Tube surgery.

You can click here to donate to FightSMA.org

You can click here to donate to Sophia's Cure.