Connect with others who understand.

Sign up Log in
Resources
About mySMAteam
Powered By
Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Are You Frustrated With Finding Effective Treatments For SMA?

A mySMAteam Member asked a question 💭
posted June 17
•
View reactions
A mySMAteam Member

We do not have health care. We have only the medical mafia

posted July 2 (edited)
A mySMAteam Member

Genetech can help you with everysdi/risdiplam. All 3 mfrs have abundant resources and are eager to help you

posted July 4
A mySMAteam Member

Have you contacted your Biogen (for spinraza) family representative? I recommend working with the company who has the medicine you desire, they can help find solution. 66 year old male, sma3, spinraza for several years.

posted June 23
A mySMAteam Member

Yep. Because despite promises made, contacting MPs, Health Ministers, advocating with CURE SMA Canada etc, I continue to be declined to receive any treatment as a 38 year old female living in Alberta with Type 3 SMA.
Declined 9 times over the past 3 years and getting quite close to being non-ambulatory.

posted June 17
A mySMAteam Member

3 treatment available for all types and age. Check cure sma website for more information

posted June 17

Related content

View All

Is Ridisplam Effective For SMA-LED1 Disease?

A mySMAteam Member asked a question 💭

For Those Adults With SMA, How Old Are You And Which Type?

A mySMAteam Member asked a question 💭

I Would Like Wish Everybody In This Group Happy Halloween. Also Be Safe 🥇🥇🥇🥇🥇🥇🥇🥇🥇

A mySMAteam Member asked a question 💭
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of Use, and our Health Data and Privacy policies.
Already a Member? Log in