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All rights reserved. No part of this website may be reproduced or transmitted, in any form, without permission. In other words, if you steal my stuff, I’m going to get pissed off, call my lawyer and run you over with my wheelchair.
© Elizabette Guéçamburu, 2019

Insta-BETTE

Had a full & successful day of physical & respiratory tests for my continued #Spinraza journey... 💪🏼❤️ The numbers are up again! #spinalmuscularatrophy

So, I think I’m just what the LEGO Movies are missing. (Thanks to little Charlie for finding me in his Lego set.)

It’s the day after Labor Day... so... 🤷🏻‍♀️🍂🍎🎃🍁 #autumniscoming #sorrynotsorry

A great big thanks to all that planned the fun 20th PHS reunion @downtowncentury ... #Classof1999

Patterson High School Class of 1999! We celebrated 20 Years at the gorgeous @downtowncentury — what a night! (photos via @m2schut )

A family dinner with relatives visiting from France... 🍽🍷😀

📚❤️ #bookclub #wherethecrawdadssing

August is #spinalmuscularatrophy Awareness Month. 1 in 40 people are carriers of the SMA gene. If you are lucky enough to be related to me (and, really, why would you NOT want to be related to me?!) that chance you are a SMA carrier is even higher. What can you do to support SMA Awareness? First of all, be a #disability advocate & ally. Support programs & services (both governmental & non-profit) that offer independent-living opportunities and home & community-based inclusion for people with disabilities. Secondly, support businesses that value accessibility. And, thirdly, vote for local, state & federal political candidates that share these values. Here are a couple great organizations & causes to support! @nmdunited @allwheelsupinc The Disability Integration Act (H.R. 555, S. 117)

Loving the new @starbucks in Patterson... but, need one more #disabledparking spot!

Ready to get the magic juice... #spinraza #spinalmuscularatrophy

Zorionak, Otto! 🍷#happybirthday

Check out my latest post— “84 Minutes... and Counting.” (link in bio) #spinalmuscularatrophy #disability #disabilityintegrationact

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Introducing… SPINRAZA GIRL!

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Date October 31, 2017
Tags biogen, disability, halloween, humor, ionis, muscular dystrophy, nusinersen, spinal muscular atrophy, spinraza, wheelchair
Comments 7 Comments

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Margaritas & How To Stalk A Physical Therapist

Nutcrackers, Holiday Decorating & All The Lies We Tell

7 thoughts on “Introducing… SPINRAZA GIRL!”

mamajo23

YES

LikeLiked by 1 person
- October 31, 2017 at 7:52 pm
- Reply
Barbara Saavedra

Super Cute! Happy Halloween!

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- October 31, 2017 at 8:13 pm
- Reply
Tammi Bradley

Happy Halloween, now go save the SMA world!

LikeLiked by 1 person
- October 31, 2017 at 10:19 pm
- Reply
fran huston

Xoxo

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- November 1, 2017 at 1:25 am
- Reply
Annie Guéçamburu

We love it and we love you

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- November 1, 2017 at 2:07 am
- Reply
Julie Ann Frame

You ROCK!

LikeLiked by 1 person
- November 1, 2017 at 12:15 pm
- Reply
Alexis Rose

Awesome!!

LikeLiked by 1 person
- November 2, 2017 at 4:53 pm
- Reply

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