Brainstorm

In a world with no shortage of opinions I am not going to burden you with another one. I have been getting a lot of questions about Brainstorm and Nurown this week. I don’t know anymore than you do.  I can tell you that the company treated me with as many injections as they could manufacture with a single bone marrow aspiration. When that ran out, so did my treatments. I have received only one treatment in the past 15 months. The Philadelphia VA treated me exactly in accordance with the clinical trial protocols.

Here is the data from my VA medical records. I signed an agreement with the VA and Brainstorm giving them permission to disclose my information. 


Bone Marrow aspiration:  11/19/18 


Nurown Infusion Dates:
12/27/18
2/12/19
4/18/19
7/18/19
9/18/19
11/21/19
8/12/20



ALSFRS r:
Leading slope from diagnosis to first Nurown treatment averaged a loss of 0.45 ppm. 
11/19/18 – 21 
12/27/18 – 21
1/25/19 – 23 
3/15/19 – 26 
5/17/19 – 27
8/23/19 – 27 
11/1/19 – 27 
12/20/19 – 26 
3/27/20 – 25 
7/31/20 – 24 
10/2/20 – 24 


PFT:
Unfortunately I have not seen Pulmonary since this whole Covid thing started. I have been doing Virtual clinic so the last data point is the end of 2019. I have still not gone back on the Trilogy despite being hospitalized with pneumonia for 8 days in February 2020.
12/19/2019 PFT: FEV1 2.51 (58% pred), FVC 3.21 (60% predicted), FEV/FVC 78%
11/1/2019 PFT: FEV1 2.80 (65% pred), FVC 3.69 (68% predicted), FEV1/FVC 76%
8/23/2019 PFT: FEV1 2.71 (XX% pred), FVC 3.46 (XX% predicted), FEV1/FVC XX%
7/18/2019 PFT: FEV1 2.45 (56% pred), FVC 2.89 (53% predicted), FEV1/FVC 85%
5/17/2019 PFT: FEV1 2.54 (58% pred), FVC 3.84 (71% predicted), FEV1/FVC 66%
3/8/2019 PFT: FEV1 2.79 (XX% pred), FVC 3.85 (XX% predicted), FEV1/FVC 72.5%
2/12/2019 PFT: FEV1 2.55 (59% pred), FVC 3.11 (57% predicted), FEV1/FVC 82%
1/25/2019 PFTs: FEV1 3.12 (72% pred), FVC 3.81 (70% predicted), FEV1/FVC 82% 
12/27/2018 PFTs: FEV1 1.83 (42% pred), FVC 2.61 (48% pred), FEV1/FVC 70% 


Elliptical Results:
Unfortunately, also pre Covid because the Governor of Pennsylvania shut down the facility where I was using the equipment. I have been riding at home with similar results but it is not standardized.
11/14/2018 Time 40:00 Distance 1.81 miles  
4/3/2019 Time 40:00 Distance 3.05 miles  
3/16/2019 Time 40:00 Distance 3.11 miles  
5/30/2019 Time 40:00 Distance 4.41 miles 
7/8/2019 Time 60:00 Distance 5.41 miles  
7/24/2019 Time 60:00 Distance 5.63 miles  
8/7/2019 Time 60:00 Distance 5.84 miles  
9/9/2019 Time 60:00 Distance 6.04 miles  
12/2/2019 Time 60:00 Distance 6.11 miles 

3 thoughts on “Brainstorm

  1. I am of the belief this has become a pr nightmare with real lives at stake. What matters is it appears to have worked for you/ I am no doctor. I feel it is cruel to leave you without further treatment. What can the general public do beyond signing the petition and contacting elected officials?

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  2. Unfortunately it’s all about the money. This insurance industry wants to keep us alive. They get a lot of money from the chairs we sit in, and the beds we sleep in. Everything we use to stay alive is beneficial to them.

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  3. Love to understand how you got this treatment outside of the NurOwn trial. Love to help myself and others explore alternative ways to get this treatments.

    I’m so happy you got this and hopefully you can get on more treatments soon!

    Like

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