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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, 2021

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✅ Clean Out Closet

grateful for zoom & books. ❤️📚

A birthday girl stopped by today to say hello. 🎈🦄 #goddaughter

Aside from medical appts, today was the 1st time in a year that I went inside a place that wasn’t my own home. While I’m relieved, the trauma is still real. Please #GetVaccinated so your #HighRiskCOVID19 friends & family are safe venturing out into the world with you again.

“One Year In” — new blog post (link in bio) 😷#highriskcovid19 #disability #spinalmuscularatrophy #vaccine

As a reward to myself for enduring a looong day of neuromuscular assessments yesterday, today I got a carne asada burrito from my favorite taco truck. I just ate 2/3 of it & now I have epic cilantro burps.

A long, long day of physical & respiratory evaluations with the neuromuscular team... good, important stuff, but glad it’s done! 🥴 Whew! #spinalmuscularatrophy

Happy Galentine’s Day! 💕💌☕️🌸🧁 (Celebrate all the supportive & caring women in your life today! ❤️)

Another #Spinraza treatment in the books earlier this week. It was a tough one this time, but glad to have it behind me. ❤️💉 #spinalmuscularatrophy

I know it’s been a long year, but don’t fret— today is Superb Owl Day!!!! 🦉❤️ #SuperbOwl

Be sure you select the correct option “ITEM” or “LB” on grocery deliveries. 6 hrs later, I’m still worried that Instacart’s Emmalee thinks that I’m the kinda person that was in desperate need of just ONE banana. (Please accept my 5-star rating & let’s not speak of this again.)

Feeling grateful & thankful to have received my 1st dose of the #COVID19 vaccine this past week. ❤️ This was *only* possible because I was lucky to have a doctor & pharmacist that fought really hard for me. This is because the #disabled are still not prioritized in most places, including California. It shouldn’t be this hard for high-risk people like me to get vaccinated.

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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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