[Igor]

Dr. Beldlack

Sorry for my mistake 🙁

[Igor]

@Danielle, no more excuses FB group has a restriction to speak about research   drugs and I can write only comments.

I sent message to Mike Henson and he didn’t answer. i wrote to IamALS and alsa-national.org but no reply. I sent emails to 4 well known PhD and no reply

I think nobody (no patients, no charity funds) is interested in this idea. It is strange but as it is.

I’ve the first time met such situation. There is not any effective drugs for fatal disease and people don’t want to try to do this. I don’t understand ALS patients, but I have ALS too.

I connected with BrainStorm. So we won’t receive access to NurOwn this year. Price is unknown.

@Dagmar, all reversal cases are checked by Dr. Bedluck from Duke. Yes, protocols are not useful for everyone.

Mike Manchester’s wife is A GREATE WOMAN

 

[Igor]

Dear All

Thank you that read me.

I decided to stop my researching  papers in research tree.

[Igor]

Thank you a lot for replays.

I still think about it ….

 

[Igor]

I am trying to promote crowdfunding project today. I’ve sent some email to popular people. I hope some of them believe me and help to promote the project.

Time is most valuable resource for me

 

[Igor]

So, I started crowfunding project and put my 100 USD first.

Target is 12 000 000 USD

I’ll try to share it as much as possible.

I think it should be seen by 12 000 000 people and we’ll be able to gather money

[Igor]

I saw a video where patients from phase 2 trial shown a good recovery progression.

A speaker told that this therapy slow down regression up to 80% as I remember.

I don’t like this collaboration because it is for process not for result.

 

I prefer this associations to reduce placebo patients and find the lobby to make FDA gives improvement for this therapy

 

 

[Igor]

Dear @Owen

Thank you a  lot of taking part in this project.

I don’t want to create any fund. I think if I have money I’ll find a fud who can take them and give grant.

It’ll be a specific grant with KPIs like time, clear result and etc

[Igor]

When I read this paper “NIH Grant Supports Work Into Cause of TDP-43 Protein Clumps in ALS, Alzheimer’s”
I wanted to cry.

One more grant for research like a process.
It seems to me funds Universities who give grants don’t look around to support teams who most close to create an efficient drug or therapy.

Patients won’t receive anything until this behavior is changed.

[Igor]

Thank’s

[Igor]

Do they have a record of it?

[Igor]

@Danielle, thanks a lot

[Igor]

@Danielle, I’ve connected to research team who knows  inhibitor for USP14 field very well. they need only grant to do the task. I was told it is a year, but if they have enough money to arrange more resources from Europe and other countries from different time zones it will be possible to work like 20 hours a day. I am sure it is possible.

Another case. I am looking for hospital who can follow phase1 clinical trial of inhibitor to find out a price of it.

I am practically sure we can find inhibitor at preclinical stage.

You know some peoples answer me, some I think see at me like a freak. I don’t have medical education, I am not a famous men and it is very difficult to reach for example targetals project. It seems that they are public but they don’t answer at all.

So I think I’ll start crowdfunding project and try to connect to ordinary people. I think funds will connect to me if I could create a popular crowdfunding project.

It is difficult to do, but I’ll try.

 

 

 

 

[Igor]

I think i go in right way to activate proteasome.

New paper on alsnewstoday
<h1 class=”entry-title”>Researchers Identify New Genetic Defect Linked to ALS</h1>

[Igor]

@Owen, I agree with you. Please read my next topic

[Igor]

@danielle be careful. It works well for sure and I felt well. But I don’t have any researches how it officially works for ALS patients.

We are on the one boat. I am looking for the way to solve our health problem. The first result is investments to speed up researches till human tests. It is a hard way, but …

[Igor]

Giselle, it is a vibration platform https://powerplate.com/why-power-plate/about-power-plate

[Igor]

I’ve already answered but reply is “This post is awaiting moderation.” because of url in it.

it is a vibration platform. powerplate dot com

[Igor]

Dear Dagmar

I need help from some MD who can read post “Why ALS patients shouldn’t wait for fast appeared drug and therapies?” and gives his opinion about USP14.

I wrote to Amanda about this.

“no one can argue with” – probably yes, but if post don’t have replies I am not sure that anybody read it.
This forum doesn’t have viewings count.

[Igor]

I’ll continue for sure, but I see only your reply.

I think my posts are not interesting for the most of members 🙁

[Igor]

I have.

“People who don’t know me think I am drunk.” – the same

My friends first time told me that it is 10 a.m. but your are already drunk 🙂

[Igor]

Sorry, it is difficult to read. Format is not good. 🙁

[Igor]

Dear Danielle

Can you share this message to me too?

I think to take part in clinical test in US.

They wrote “repair-ALS” and it is interesting to find out more about this drug

[Igor]

Hi All

the Healey Center Platform Clinical Trial is a very specific. It is not possible to choose drug (rigment) you want.

They’ll use randomized dividing between drugs and it will be double blinded trial too.

I tried to reach Robert Glanzman to find out their plans of clinical trials in US, but I couldn’t.