Jean-Pierre Le Rouzic

> They advised against taking many supplements because they suppress appetite
Thanks for the information, I didn’t know that. It’s very important indeed.
Losing appetite is perhaps the worst thing that could happen to pALS, because they need more calories than a healthy person (at least when mobility is not lost)

Many thanks Mark!

> My family must have a mystery gene.
Then it’s a pity nobody is studying your family.

The C9orf72 was a real mystery, while it causes half of the cases of familial ALS, it was found only in 2011, 18 years after SOD1 mutations were associated with ALS.

The reason it eluded researchers is that for them a genetic disease could only stem from…[Read more]

> I like what ALS Assoc did here with the screening tool in trying to speed up dx.

Yet, it’s a bit weird that an ALS association tries to define ALS.
The ALS association can steer the direction in which research goes, simply because they fund a lot of it.
It has zero interest to fund research that would find that ALS is actually either or…[Read more]

Bonjour David,
Votre français est excellent!
J’ai toujours aimé l’anglais, mais l’école ne m’a pas beaucoup aidé à ce propos. Par contre l’attrait pour la science-fiction et l’activité professionnelle m’ont permis de m’améliorer en anglais. Mais l’anglais parlé en écosse me semble absolument insurmontable 🙂

> I set up the lumbar puncture (Intrathecal)
I am not a religious person, nor proficient in English, but I thank you for your dedication to the search for an ALS cure.

> They may be withheld by customs.
TUDCA is not a regulated drug, it’s a supplement.
Yet you might have to pay VAT in addition to the Amazon public price.

> Hab von Anfang an, die Diagnose in frage gestellt.

People with Parkinson disease have also severe constipation, and C9orf72 is also found in some people with Parkinson.

All these diseases (ALS, Alzheimer, Parkinson, FTD, Huntington, etc are not clear cut as in textbooks, each case is somewhere in a spectrum of diseases. One scientific article…[Read more]

> Was ist GI Funktion???
Gastro-Intestinal
(Magen-Darmtrakt)

In German’s Amazon there are two brands of TUDCA.
In Netherland’s Amazon there is one brand: “TUDCA Liver Support”

I guess this clinical study is more credible than many other.
Yet from a publication it looks like Nurown’s therapy.
It’s reinjected MSCs that are “expected” to produce Vegf, a neurotrophic factor.
There were two dozen unsuccessful Mesenchymal clinical trials in ALS, why do they expect this one to be successful?
Another thing is a bit strange is…[Read more]

> Anova-IRM in Offenbach, Germany seems to offer stem cell therapy
In Germany you can find private clinics that offers (against huge amounts of money) treatments against cancer, diabetes, ALS, Alzheimer. All kind of diseases that are not treatable in the rest of the world. Indeed they are just scams that happen to be (more or less) legal in…[Read more]

> And what could that mean for me? I have C9 ORF72

Jörg,

Some caveats:
Nobody knows how to heal from ALS, the article above is a research article, basically it hints that something is wrong in insulin management in a fly model of ALS.
Flies are insects, they do not even have a spine like vertebrates, scientists use them as they are convenient…[Read more]

I nearly completely agree Mark, except the bit about biomarkers.
We have a good biomarker, it is TDP-43 aggregates in cell’s cytosol, it appears in 97% of ALS cases, it could even be detected in the blood stream.

Why is it not used? Perhaps because it does not fit the narrative about this disease that scientists expect. TDP-43 aggregates are not…[Read more]

Thanks Andrew,

> open access arrangement may be started next year prioritising more rapidly progressing patients.

It’s a nice information!

Yes, thanks Amanda,
The link tells “The study completed on 15 Jul 2021” and that there are no posted results.
I can’t find any news on internet.

Many thanks for the answer Les!
First person in UK, possibly in Europe? This is very impressive!