oneSMAvoice

oneSMAvoice is an online community that educates, supports and empowers those impacted by spinal muscular atrophy (SMA).

It provides trustworthy content and a forum for community members to connect and learn from each other.

02/28/2023

In honor of , we're sharing Kerry's inspiring story of diagnosis and how she has greatly surpassed her initial prognosis. At 18 she's turned to motivational speaking, spreading awareness and working to expand accessibility in South Africa. Read her story: https://loom.ly/7yvLJe0

02/22/2023

Celebrate Rare Disease Day by joining NIH virtually or in-person on February 28th. The free event features panel discussions, rare disease stories, exhibitors and scientific posters. Register & learn more: https://loom.ly/tBtaOcI

02/15/2023

A new study has found that the severity of muscle impairment and scoliosis before treatment may help predict response to nusinersen for certain patients with spinal muscular atrophy (SMA). Learn more: https://loom.ly/zzTMg6o

02/08/2023

This Austin baby beat the odds. Noah was the first baby in Texas to be identified with spinal muscular atrophy — commonly known as SMA — through the newborn screening. He now has no signs of SMA after receiving gene therapy. Read his story: https://loom.ly/ilL2m4s

01/25/2023

Receiving a spinal muscular atrophy (SMA) type 1 diagnosis can be very overwhelming. This guide for parents and caregivers, whose infant has had a recent diagnosis of SMA type 1, is a great resource: https://loom.ly/Bm-vYi8

01/17/2023

24-year-old Khi is a spinal muscular atrophy (SMA) advocate and patient who is bringing awareness to SMA through her video blog. Read her inspirational story, and learn more about her mission: https://loom.ly/iaGR6JE

01/10/2023

Getting around in a wheelchair can be especially tricky during the winter months. Check out these tips from the United Spinal Association to help you stay safe and mobile during those tough winter months: https://loom.ly/mVdKKQM

01/04/2023

With the new year many choose to focus on wellness. Are you aiming to make strides in your or your child's strength and mobility? Check out this article that includes therapeutic exercises, nutrition tips and mental health support for patients with spinal muscular atrophy (SMA): https://loom.ly/XEMBYvU

12/20/2022

Happy Holidays from all of us at oneSMAvoice. We hope your holidays are filled with joy and laughter through the New Year.

12/14/2022

Need some unique gift ideas for this holiday season? This article has great tips for choosing gifts, and includes a list of gift ideas, for children with special needs: https://loom.ly/PDtEHNo

12/13/2022

"Your son won't see his first birthday". Read the inspiring story from Amanda about how her son with SMA type 1 has defeated the odds and brought her family joy and hope: https://www.onesmavoice.com/community-stories/patient-story-amanda/

12/02/2022

Our second giveaway for 12 days of Christmas we have a one of a kind, Wagon donated by Novartis!!
These wagons can also become sleds, which means fun all year round even in the winter months!
🎗💜
*Must be a US resident to win*

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http://oneSMAvoice.com/

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