Brainstorm Nurown 'Right to Try' participant shares progress

Chuckdobro

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I have been given the opportunity to take place in the phase 3 trial at MGH. About 50 people will be participating in the study there. I must stop taking Radicava prior to participation. Not sure if I want to roll the dice...... Any thoughts?
 

KimT

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Chuck,

If I qualified, especially if the procedure were at MGH, I'd be on my way.

That said, you have to weight your personal costs/benefit possibilities.

In my case, I have no family, I'm not rich enough to sustain life through invasive respiratory technology, so something like this FOR ME would be an easy decision. For others, it is not.
 

Chuckdobro

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I have a wife of 22 years and a 13 year old daughter. My decisions are not about me. Going forward, I am trying to make the best overall decisions for my wife, child, and hopefully the ALS community.
 

Nikki J

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I am sure what your family wants is what gives you the best quality and longest life. I don’t say this lightly. I am FALS. My sister, mother and other relatives have died from ALS.

Since you live in the other Marblehead participation in a study at MGH will involve travel and some expense. How much of a burden depends on your abilities and resources. The chance of placebo is an issue. Discontinuing Radicava is another. I have to say although radicava is approved not everyone sees a benefit.

If you are not already an MGH patient and know this, going to MGH is a great experience and being in a study has the advsntage of having someone watching you closely. I know the people of the team for this trial. They are great
 

Par220

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I'm just a messenger and I wanted to let you know Matt Bellina posted on his facebook account today:

What is remarkable is that I was not able to get out of my chair on my own before Nurown. After my second treatment I was able to pull up to standing using both my legs and my arms. Since the third treatment I am able to stand from my chair without the aid of my arms. I have not been able to do this for over 2 years and it feels great.
We all need to push the FDA to approve this treatment. It is simply unacceptable that I am the only one receiving this treatment outside of the trial. All people with ALS deserve this chance
 

harrim4

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Hi Chuck,
This is actually my first posting. I was diagnosed with bulbar onset this past January 2019, but also have weakness in my left leg. I am proceeding with the Brainstorm Nurown trial in Irvin, CA ( if they will take me, that is). I had my screening last week, and my 2nd appointment in a few weeks.
I have to take a plane to get there but with air miles and "cheap" fares I am willing to give it a try. At almost 60 years old, I feel like even if I get the placebo, I hope I am helping to assist in getting rid of this horrible disease.
Michelle
 

lgelb

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Welcome, Michelle. Feel free to start a thread elsewhere to introduce yourself.

Best,
Laurie
 

KimT

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Michelle,
Please keep us updated on your experience! Best of luck!
 

Chuckdobro

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I wish you luck Michelle. I'm not sure if I'm going to be able to do it. For me it's a very difficult family decision. I'm still struggling with participating in the trial.
 

Ken15

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I'm not sure if I'm going to be able to do it. For me it's a very difficult family decision. I'm still struggling with participating in the trial.
My PALS is currently engaged in a clinical trial at the Mayo Clinic in FL. We are about 7 weeks into it, we have traveled 190 miles each way for the last 8 weeks (including pre-trial testing/qualification), the treatment is applied via lumbar puncture, and the target end date is early October.

Although this trial is being run (via the Mayo) by a different drug company (Biogen), if you think our experience can help you in any way, please ask away.

Good luck,
Ken
 

Par220

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Please search facebook for the ALS 'No More Excuses' FDA protest on June 12th and 13th in DC for access.
 

rknt50a

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I too am interested in knowing who was at the FDA meeting, exactly what the protesters had to say to the FDA, and what the FDA had to say to them.

The lack of a transcript or specific information about the meeting is odd imo, especially in light of the extensive social media blasts from the group on their other activities.

They call me impatient.
 

lgelb

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This was available in advance. The FDA has invited the activists to meet with FDA officials and the manufacturers of the treatments in question. Understandably, the FDA asks for the manufacturers' presence at any discussion of potential new tracks for availability.
 

Ulf

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I talked to the investigator at Uci. She met with the chief science person from brainstorm. He told her that the FDA wants them to complete the trial. She is the one running the nurown trial at Uci. Thought you might want to know.
 
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