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title
Team Rexy
description
Our family and SMA.
image
site name
Team Rexy
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updated
2026-03-04 10:45:34
raw text
Team Rexy | Our family and SMA. Menu Home About SMA About Us Search for: Skip to content Team Rexy Our family and SMA. We’re in SMA awareness month Posted on August 21, 2017 by teamrexy Spinraza When we got Rexy’s diagnosis there was no hope, no treatment. We were told it was an exciting time for SMA, not much comfort really. We’d googled SMA type 1, we knew the craic. Our awesome team are from the Centre for Life which is a centre for excellence for Muscular Dystrophies (SMA comes under the umbrella of MD but I guess technically speaking it’s a Motor Neurone condition) and they are also a drug trial site. After diagnosis I hit the tinterweb, joined all the Facebook groups and saw all these type 1 children sitting, and pretty healthy all down to a drug that was being trialed called Nusinersen. This was being trialed in NEWCASTLE by our team! But Rex was too old so couldn’t be included. There was a type 2 trial for the drug coming up, I became obsessed wi...
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