SMA United for Treatment Options

"A grass roots community advocacy organization for treatment options for Spinal Muscular Atrophy (SMA)"

[SMA United for Treatment Options @sma_united]

UPDATE: CureSMA workgroup revises guidelines
CureSMA workgroup has revised their guidelines and is now recommending immediate treatment for SMA patients with 4 smn2 copies, as requested.

Earlier last month, SMA… https://t.co/dr7XOwpTg7

[SMA United for Treatment Options @sma_united]

WE HAVE A NEW WEBSITE!
Check it! Share it! Take it for a spin! Do you love it as much as we do? 💜
.
.
.
.
.
#spinalmuscularatrophy #spinalmuscularatrophytype1 #spinalmuscularatrophytype2 #spinalmuscularatrophytype3… https://t.co/aRMrBQWlHD

[SMA United for Treatment Options @sma_united]

UPDATE on Scholar Rock.

Late last month, SMA United reached out to Scholar Rock regarding their trials involving SRK-015 and how/when they plan on including adults over the age of 21 and the type 1 population into… https://t.co/l2YtlxyUc7

[SMA United for Treatment Options @sma_united]

Innovation & excellence in study designs is the future we want to be a part of.
.
.
.
.
.
#advocate #advocacy #patientsoverprofits #nerdy #smaunited #spinalmuscularatrophy #spinalmuscularatrophytype3… https://t.co/niFtJbPhyq

[SMA United for Treatment Options @sma_united]

Meet Hannah Price - SMA Type 1 Representative

Better known as Hanna Banana to her friends, Hannah is a veteran of the SMA community. She is currently attending college and pursuing a degree in Healthcare Information… https://t.co/SHI5Odm91K

[SMA United for Treatment Options @sma_united]

Dear SMA community, guy have options now. We’re going to make sure of that.
.
.
.
.
.
.
.
#spinalmuscularatrophy #spinalmuscularatrophytype1 #spinalmuscularatrophytype2 #spinalmuscularatrophytype3… https://t.co/ENrDjxJueW

[SMA United for Treatment Options @sma_united]

We are advocating for inclusive research models via our very
own community voices.

In other words: YOUR VOICE
.
.
.
.
#spinalmuscularatrophy #spinalmuscularatrophytype2 #spinalmuscularatrophytype3… https://t.co/bZ7MgPw5fA

[SMA United for Treatment Options @sma_united]

The SMA patient community must have a seat at the table, not just exist on the sidelines.
.
.
.
.
#sma #spinalmuscularatrophy #spinalmuscularatrophyawarness #spinalmuscularatrophytype1 #spinalmuscularatrophytype2… https://t.co/LpwmSQxj4Z

[SMA United for Treatment Options @sma_united]

Strong people stand up for themselves, but stronger people stand up for others. .
.
.
.
#notallheroeswearcapes #spinalmuscularatrophy #ame #atrofiamuscularespinhal #atrofiamuscularespinal… https://t.co/VyWO0hqbo3

[SMA United for Treatment Options @sma_united]

Difficult roads often lead to beautiful destinations.
.
.
.
.

#goodmorning #thepath #beautifuldestinations #thestruggle #thestruggleisreal #spinalmuscularatrophy #spinalmuscularatrophytype1… https://t.co/uYFTXKv1e1