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Jean-Pierre Le Rouzic replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 9 months, 3 weeks ago
> 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) -
Jean-Pierre Le Rouzic replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 9 months, 3 weeks ago
Many thanks Mark!
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Jean-Pierre Le Rouzic replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 9 months, 4 weeks ago
> 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]
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Jean-Pierre Le Rouzic replied to the topic can someone give advice? in the forum Diagnosis Information and General Questions 10 months ago
> 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] -
Jean-Pierre Le Rouzic started the topic Bosutinib may stop the disease progression for some ALS patients in the forum Research Topics 10 months, 1 week ago
A 12-week phase I dose-escalation trial open label has been launched in early 2021 in Japan to evaluate the safety and tolerability of Bosutinib.
The results of this clinical trial had just been announced.
Of the nine patients who drank 100-300 milligrams of bosutinib daily for 12 weeks, five stopped progressing, the remaining four remained…[Read more]
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Jean-Pierre Le Rouzic replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 10 months, 2 weeks ago
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 🙂 -
Jean-Pierre Le Rouzic replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 10 months, 2 weeks ago
> 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. -
Jean-Pierre Le Rouzic started the topic In-Vitro Generation of Posterior Motor Neurons from Human Pluripotent Stem Cells in the forum Research Topics 10 months, 2 weeks ago
The ability to generate in-vivo spinal cord motor neurons from human pluripotent stem cells would be a major milestone in motor neuron-based diseases such as ALS.
Indeed we are still decades away from that goal. Nevertheless scientists are working hard toward that goal.
Motor neurons are involved in governing voluntary actions and in general…[Read more]
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Jean-Pierre Le Rouzic replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 10 months, 2 weeks ago
> 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. -
Jörg Dimmeler and
Jean-Pierre Le Rouzic are now friends 10 months, 2 weeks ago
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Jean-Pierre Le Rouzic replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 10 months, 2 weeks ago
> 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]
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Jean-Pierre Le Rouzic replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 10 months, 3 weeks ago
> Was ist GI Funktion???
Gastro-Intestinal
(Magen-Darmtrakt) -
Jean-Pierre Le Rouzic replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 10 months, 3 weeks ago
In German’s Amazon there are two brands of TUDCA.
In Netherland’s Amazon there is one brand: “TUDCA Liver Support” -
Jean-Pierre Le Rouzic replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 10 months, 3 weeks ago
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] -
Jean-Pierre Le Rouzic replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 10 months, 3 weeks ago
> 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] -
Jean-Pierre Le Rouzic replied to the topic Enhanced insulin signalling ameliorates C9orf72 ALS in a fly model in the forum Research Topics 10 months, 4 weeks ago
> 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]-
Jean-Pierre, I agree with your description of a cell under stress and how that can possibly lead to ALS symptoms.
However, regarding “ALS people who have a PEG live much longer than those who do not.” – – wouldn’t that be a logical conclusion, since people with a PEG are able to get continued nutrition, whereas those without one (but who need it)…[Read more]
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Jean-Pierre Le Rouzic replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis Information and General Questions 11 months ago
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]
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Jean-Pierre Le Rouzic replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 11 months ago
Thanks Andrew,
> open access arrangement may be started next year prioritising more rapidly progressing patients.
It’s a nice information!
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Jean-Pierre Le Rouzic replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 11 months ago
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. -
Jean-Pierre Le Rouzic replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 11 months ago
Many thanks for the answer Les!
First person in UK, possibly in Europe? This is very impressive! - Load More