HOW YOU CAN PAVE THE WAY TO CURE SMA

Family and friends, I’m going to need your help. With Thanksgiving right around the corner, I was hoping we could all take the time to give back and help out a cause- something I have been doing now for the last fifteen years. I promise it will only take a couple of minutes.

As a little girl, I can remember my parents packing a bag and making a trek up to Boston Children’s Hospital to see a special team of doctors with me. Given that this disease was progressive and untreatable at the time, there was never any good news from these appointments. I remember always feeling sad and fearful, so in an attempt to make me feel better, my parents would take me to the hospital gift shop and let me pick out a stuffed animal. It was the only thing that made me smile on those days.

Almost two decades later, those same feelings of sadness and fear still exist inside of me. I’ve lost the ability to hand write. I’ve lost the ability to feed myself. I’ve lost so much energy. And, just in the last six months, I’ve very slowly begun to lose the strength to breathe on my own. It often makes me wonder what’s next. This isn’t something that is meant to scare you. I love my life and wouldn’t trade it for anything, but it’s important for me to share a glimpse of reality with you. However, there is a silver lining to my story here. Unlike the little girl who only had her stuffed animal to cling on to underneath fluorescent lights and four white walls, I now have something more powerful and promising to cling to- hope.

There’s currently a drug called SMNrx which has been proven safe and effective for individuals with SMA. Although this is incredibly promising news to the SMA community, we now have the biggest hurdle to face: getting this drug approved by the FDA. The FDA approval process can take years, years that many of us don’t have left, which brings me to why I need your help. An Acceleration Approval option is available to us, we just need our voices to be heard by the right people. You with me, guys?

Below is an email template. Please copy and paste it into a new message, fill out your information, and send it to the email addresses listed here. That’s all I’m asking you to do- see how simple it is?! Imagine a world where SMA can no longer take away the things in life so many people take for granted. Imagine a world without SMA.

Please send the email to:
John.Whyte@fda.hhs.gov
Diane.Ruiz@fda.hhs.gov
janet.woodcock@fda.hhs.gov
john.jenkins@fda.hhs.gov
In the “Cc” line please enter: INFO@THEFASTMOVEMENT.ORG so that we can track how many emails are sent.

https://docs.google.com/document/d/1qkvrnYkjbmu3LUJliOVbu04G7F60dEfNyklcUYoj1ms/edit
(In regards to patient age and type, I’m 25 and have type 1)

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Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

6 thoughts on “HOW YOU CAN PAVE THE WAY TO CURE SMA

  1. I will e-mail shortly. I will also ask some of my family and friends to send a message. Do you mind if I post this on Facebook?

  2. Me again, the document is not coming up for me. Please check it. If you want to email it, I will just forward it to friends asking them to join us in the fight.

  3. Alyssa –

    You are amazing! We met many years ago and recently bumped into each other at the Mall. I love reading your blog and wish you all the best, hope!

    I just sent off my email.

    Happy Thanksgiving sweet girl!

    xx

    *From:* Living with Spinal Muscular Atrophy [mailto: comment-reply@wordpress.com] *Sent:* Tuesday, November 24, 2015 6:49 AM *To:* beth.vetromile@nalarihealth.com *Subject:* [New post] 1931

    Alyssa Katherine Silva posted: “Family and friends, I’m going to need your help. With Thanksgiving right around the corner, I was hoping we could all take the time to give back and help out a cause- something I have been doing now for the last fifteen years. I promise it will only take “

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