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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?

mySMAteam asked a question 💭
San Francisco, CA
June 17, 2024
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A mySMAteam Member

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

July 2, 2024 (edited)
A mySMAteam Member

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

July 4, 2024
A mySMAteam Member

Yes I am spinarza liquid I really can’t tell the difference I been on it 2 yrs now

October 7, 2024
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.

June 23, 2024
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.

June 17, 2024

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