Dr. Beldlack

Sorry for my mistake 🙁

@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.… Read more

Dear All

Thank you that read me.

I decided to stop my researching  papers in research tree.

Thank you a lot for replays.

I still think about it ….

 

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

 

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

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… Read more

I want to start edavarone treatment in USA.

I bought 8 months package in Japan. I visited ALS clinic there. It is cheap there and it is possible to buy it remotely.

I was told that it can slow degradation up to 40 percent.

Do you have an experience of taking it?

Does it help you?

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

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… Read more

Thank’s

Do they have a record of it?

@Danielle, thanks a lot

@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… Read more

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>

One more week of my researches left.

I think it is a good idea to create two side therapy:

1st side – reduce incoming PrPC flow
2nd side – clear TDP-43 aggregates in nerve cells

1st side description
PrPC to PrPSc transformation looks like Henry Ford plant.
I think it is not possible to destroy it fast.
The best idea is to reduce… Read more

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

@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 …

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

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

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.

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

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

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 🙂

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

Disclaimer:

1. All ideas below are only my opinion
2. All information was taken from public Internet. There is not any spoiler here
3. I am well qualified IT specialist (project manager, analytic) and don’t have any medical education
4. I can be mistaken as any ordinary people
5. English is my second language. So, be patient if you notice some…

Read more

Disclaimer:
a) All ideas below are only my opinion
b) All information was taken from public Internet. There is not any spoiler here
c) I am well qualified IT specialist (project manager, analytic) and don’t have any medical education
d) I can be mistaken as any ordinary people
e) English is my second language. So, be patient if you notice… Read more

Disclaimer:

1. All ideas below are only my opinion
2. All information was taken from public Internet. There is not any spoiler here
3. I can be mistaken as any ordinary people
4. English is my second language. So, be patient if you notice some mistakes

I analyzed quiet a lot of clinical trials on clinicaltrials.gov and found… Read more

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

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.