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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 cells1st 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 incoming flow of PrPC and it can be done by proteasome.From inhibitor for USP14 paper:
“The availability of IU1 has led to the identification of a growing number of proteins identified as apparent targets of USP14’s deubiquitinating activity. Proteins such as the androgen receptor, cyclic GMP-AMP synthase, vimentin, GFPu, CD3δ, and most notably the prion protein PrpC show accelerated degradation or reduced levels upon IU1 treatment, most simply accounted for by reduced deubiquitination at the proteasome”It means that it is a good idea to test inhibitor for USP-14 on ALS mice and C9orf72 cases.
The good news – I know where it is possible to do and I think it will take not more than 2 months.
The bad news – I don’t have money to do this. We have to ask to dedicate full time team for this task and I think it will approximately cost 1 to 2 millions USD. It is my own opinion, I didn’t ask anybody about price.We have to find companies which research inhibitor for USP14, if the result of previous task is good. I couldn’t find their names, but I know they are.
USP14 is usually linked to different cancer types. We should convince them to use inhibitor for ALS and start 1st clinical trial. Of cause we should find money or sponsor for this trial.
I don’t have any ideas how much it can be cost. ☹2nd side description
I believe to ProMIS Neurosciences intrabodies.
The good news – they found and checked them (press release)
The bad news – it will take long time till human tests. A small company, not one product and they received COVID grant from government.I think it is possible to speed up process, but it is a resource question. Money once again.
They have preclinical phase experience (https://promisneurosciences.com/product-portfolio/) for AD, to pass it the second time will be faster.Discussion:
We have ideas and steps. The main question is money.
We can find them:
a) Crowdfunding (record youtube movies by us, share it by ourselves and popular people and etc) (difficult)
b) Grants (difficult and not quickly)
c) VC funds (difficult and not quickly)
What do you think?
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Igor
There are plenty of organisations now especially in the USA that will fund research. I AM ALS . ORG is one of those. Here in Australia it’s Fight MND.
Have you thought about proposing these ideas to PhD students at the Universities and colleges? Then going to these non profit ALS organisations with the research to ask for funding?
I think PhD students would be keen. Here in Australia we seem to fund them for new ideas and research.
I’m keen to help in anyway.
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@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.
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Igor,
There’s some really good forums I discovered on Facebook because of Bill and Andy on here.
It’s probably worth you joining those groups and putting this discussion there. Literally hundreds of active pALS and cALS in them.
https://www.facebook.com/groups/NOMOREEXCUSESALS/?ref=share
https://www.facebook.com/groups/ALSPatientandCaregivertips/?ref=share
Danielle
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@Danielle, thanks a lot
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Igor, you should also check out this website: AnswerALS.org (https://www.answerals.org/ ) – – there is an interesting webinar: https://alsnewstoday.com/forums/forums/topic/webinar-ed-rapp-shares-my-journey-to-answer-als/
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Hi Igor,
You might try contacting the ALS Therapy Development Institute. They have a form you can fill out, but I also spoke with Dileep there (contact info below), who could help put you in touch with the right people. I think the problem you’re going to face is that most organizations either a) rely on grant money for specific investigations, or b) have already programmed the funds they do have. You could try reaching out to some of the more well-known ALS doctors in the US. I emailed Dr. Richard Bedlack ([email protected]) out of the blue about a topic, and he responded to me.
I like the idea of crowdsourcing research- I haven’t heard of something like that done before. But I suspect there could be a lot of complications with essentially starting up a grant-making organization.
Dileep Dadlani
Development Director – Southeast Region
ALS Therapy Development Institute
Office 617.441.7283
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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.
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@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
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