Friday, September 21, 2012

Important Legislative Update


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 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!



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

Avery's Bucket List
PO BOX #2849
Bellaire, TX 77402

4 comments:

  1. I'm sending this letter - Pronto! We still love you and miss you Avery! A friend and fan from Missouri. :)

    ReplyDelete
  2. got this email from my senator today:

    Thank you . . .



    . . . for contacting me regarding your support for the National Pediatric Research Network Act. I appreciate you taking the time to share your views with me.



    As you may know, this legislation was introduced by Senator Sherrod Brown on July 31, 2012. Currently, this bill is pending before the Senate Health Committee. I will keep your position on this bill in mind as it moves through the legislative process.



    Thank you again for contacting me. Please continue to keep me informed about issues of concern to you and your family.



    Sincerely,

    Debbie Stabenow

    United States Senator

    ReplyDelete