Not our disease, but this is what we should be doing.

[monkeybus]

I look at plenty of other diseases, always looking at meds.

Have a look at this, the disease is ALS.

als.net/at-1501/

als.net/

This is exactly what we should be doing. Crowdsource money and investigate new treatments. A lot of money goes into ALS, MS, Alzheimer's research.

A lot of money for whichever pharma company develops a decent treatment for the above diseases.

Our orphan disease. I get the impression that they are not beavering away to find a cure for us, just drugs to treat the symptoms.

Could we have a serious discussion about doing thIs?

I am a computer engineer, I can build the website, state of the art ; sort the crowdsourcing; PayPal; other funding sources.

Cost nothing to set up, all we need is donations.

I am aware there are charities and other organisations looking into ALD and AMN, but I am thinking of a much more aggressive strategy.

What do you think?

Final link.

als.net/precision-medicine/

[dryder]

I'm in... I too am in the technology area of employment.

[monkeybus in reply to dryder]

I'll get started on it over New Year. A decent looking website is no problem at all. Indiegogo allows fundraising for medical purposes, Kickstarter doesn't. PayPal will be OK. Just need to get the word out.

Thanks, dryder, I'll message you later and we can talk about what's what.

There I was bemoaning the fact that there is no research into new treatments for us, then wilburlois15 posted about VK0214. Looks very interesting.

But look at this (from 2011)

ncbi.nlm.nih.gov/pubmed/218...

HDAC inhibitor SAHA normalizes the levels of VLCFAs in human skin fibroblasts from X-ALD patients and downregulates the expression of proinflammatory cytokines in Abcd1/2-silenced mouse astrocytes.

These observations indicate that SAHA corrects both the metabolic disease of VLCFA as well as secondary inflammatory disease; therefore, it may be an ideal drug candidate to be tested for X-ALD therapy in humans.

Plenty of reports of various chemicals that reduce VLCFA.

The paper talks about HDAC inhbitors, SAHA, also known by the name Vorinostst.

en.wikipedia.org/wiki/Vorin...

Prescribed for some types of cancer, currently being investigated for HIV. I like it when drugs have been around for a while. Plenty of information available.

I'm currently taking Valproic Acid to try and lower my VLCFA's, I'd certainly consider Vorinostat next.

We need to be thoroughly investigating any and all of these potential life-savers.