"Right To Try" in Minnesota

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GaryLee53

Member
Joined
Apr 22, 2018
Messages
13
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
I'm hoping to get BrainStorm NurOwn stem cells. BrainStorm is hoping to get the policy in early June. So I still can play my guitar, play my drums, do yard work and ride my scooter. I can't talk to well. But I'm hoping to get NurOwn.
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
Their pre-release press release was less than overwhelming.

And the cost will be incredible, if they even go for it.

RTT doesn't address cost.

A nice thing to hope for, but you might need a Plan B. :-(
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,513
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Gary, in the Newly Diagnosed sub-forum it isn't quite clear that you have actually been given a confirmed diagnosis of ALS.

As you wrote...

"The symptoms point at ALS, twitching, speech, swallowing and walking is a little slow. They completed the tests this week so I'm waiting for the results. Although pretty much sure it is ALS."

I think you're getting a little ahead of yourself here to include your Bio Interest.

I know a little bit about drums, if you are having problems walking... it will impede you on the trap set. :)

Let's hope... you still have hope.
 

jaclyn

New member
Joined
Jun 4, 2018
Messages
7
Reason
Friend was DX
Country
US
State
NY
Their pre-release press release was less than overwhelming.

And the cost will be incredible, if they even go for it.

RTT doesn't address cost.

A nice thing to hope for, but you might need a Plan B. :-(
I have heard rumors that they might give it to a few PALS that helped push through RTT for free or at a discounted rate and pretty much everyone else will have to pay the full, sky high price. I hope this isn't the case
 

GaryLee53

Member
Joined
Apr 22, 2018
Messages
13
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
It is confirmed that I have ALS.
 
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