Friday, September 21, 2012

Call For Action (Please Help Get This Act Passed Through the U.S. Senate)

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:
Here's the letter you can copy and paste for email or fax:

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.





 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!

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 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:


  1. Hi Mike and Laura, hi Avery thinking of you!!!, I read your petition I wish I could sign, sadly I live in Canada, is there something I can do from up here?, Chris Poulin, kelowna BC, Canada

  2. Just sent the letter to Senator Stabenow in Michigan on Avery's behalf. Praying for you and have so much admiration for you guys!!! Keep up the great work in Avery's honor!!!

  3. I NEVER write my congressmen for anything. I have been so moved by your Avery's story all this time that I just sent the letter to both my Georgia Senators. My daughter Avery was born exactly one month before your sweet girl. We prayed so hard for her and I still think about her a lot. God bless you all and the great work you are doing in her memory.

  4. Hi Mike and Laura, just sitting here at home, watching a few of Avery's you tube videos posts by you guys, love the talking to my sponge stick one and my tea party!!!, she's so cute!!, anyways sitting thinking about SMA, Avery it really brings tears to my eye's still, tears of sadness that Avery is no longer here and tears of joy that we got to know her through social media..Angry cause this happens to our children in this world..Tear in my heart, well I thought this was relavant to share with you guys..God Bless you both, I can't imagine how or what you must be feeling, going through..Well you are loved in this world, I care, like thousands of others, and were here for you as well!!!..Your friend Chris Poulin Kelowna BC, Canada

  5. I will get my letter out ASAP. I pray every night for your family and the scientists working on a cure for SMA. I've never felt so strongly about a cause before, and I know it's because of your lovely family and beautiful girl.

  6. I sent in my letters to my state senators the day I saw this posted. Amazingly I got a response from senator Casey! I hope you don't mind, but I'd like to share it with you.

    Dear Miss Miller:

    Thank you for taking the time to contact me regarding S. 3461, the National Pediatric Research Network Act of 2012. I appreciate hearing from you about this issue.

    Protecting and nurturing children and their families is one of my top priorities as a U.S. Senator. I believe that we must work to ensure that every child can live a full and productive life. It is estimated that twenty-seven percent of the individuals affected by one of the 350 most common rare diseases never live to see their first birthdays, making the matter of funding and promoting research efforts into rare diseases one of critical importance for the health of children.

    S. 3461, the National Pediatric Research Network Act, was introduced by Senator Sherrod Brown of Ohio on July 31, 2012. S. 3461 would require the National Institutes of Health (NIH) to establish a National Pediatric Research Network. It would also require the NIH to award cooperative grants to public or private nonprofits engaging in rare pediatric disease research, with priority given to those that are conducting clinical trials. S. 3461 has been referred to the Committee on Health, Education, Labor, and Pensions, of which I am a member. Please be assured that I will keep your views in mind as the Committee continues its review of this legislation.

    I recognize the urgent need for increased research into rare diseases. Each year as Congress begins its appropriations process, I join my colleagues in signing letters to the Appropriations Committee in support of federal funding for medical research at the National Institutes of Health (NIH). This year, 48 senators joined me in requesting a sustained investment in the NIH for Fiscal Year (FY) 2013.
    I am also the proud author of the Creating Hope Act of 2011 (S. 606). This legislation is designed to spur investment in new treatments and cures for rare and neglected diseases by strengthening and expanding the FDA’s priority review voucher program. This cost-neutral program, which was established by the Food and Drug Administration (FDA) Amendments Act of 2007, rewards a sponsor of a new drug application for a neglected tropical disease with FDA review of another new drug application of its choosing under a priority review timeframe of six months, as opposed to a standard review of ten months or more. My legislation will broaden this program to include pediatric rare diseases and make several changes to improve upon the program’s effectiveness and integrity. Provisions based on the Creating Hope Act were included in S. 3187, the Food and Drug Administration Safety and Innovation Act (FDASIA). FDASIA passed the House and the Senate and was signed by the President on July 9, 2012.

    Bob Casey
    United States Senator

  7. I would simply say to you all “awesome information”
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  8. Thinking of you every day, and sending many prayers and much love today, October 11. Happy 11 months to sweet Avery.

    Xoxo, your SMAn Melissa

  9. Hey baby Avery.
    Even though I never had the pleasure of meeting you, I miss you! But hey, guess what some scientists discovered just a couple of days ago? Actually, a lot. Look at this link, mommy and daddy: I know miss Avery that you probably don't know what it all means. It's a lot of big words mixed with alphabet soup! But it means we are so close, Avery. I read the two articles that this summarized, and you wouldn't believe the advancement! Guess what?! They stuck some flies with SMA, and they were able to fix the flies! I know you aren't a fly, Avery, but really, it's just a little bit closer. We weren't able to do that yet. It still will probably take years to get it working for humans, but Avery, soon, SMA will be a thing of the past. If it isn't by the time I'm graduated from medical school, I promise that I personally will work toward that.
    Love you Avery! And Mom and Dad, keep your head up. you have done a beautiful job raising awareness. You are the type of parents I wish I had.

  10. Letter done and sent! Always thinking of you Avery! xoxo

  11. Thank you for all this information. Not a day goes by that I do not think of sweet,adorable Avery. Still praying for your family. You have truly touched my heart in a way I never imagined. Thank you!

  12. And I just e-mailed this letter to both of our senators.

  13. I emailed this to both New Mexico's senators.

  14. Michael and Laura, thinking of you both as we get closer to Avery's 1st birthday 11/11/11. I am having a Mass said at my church, St. John Neumann on Staten Island, NY at 9 AM Tuesday, November 6th. Please know that we are still keeping that sweet angel baby in our hearts, thoughts and prayers. Sending blessings to you, xo

  15. We really need this, don't we? I have contacted my legislators.

  16. Congratulations!!! I pray that Avery's little sister is completely healthy!! Blessings to you all!!