Potential Trials and Medication

[matthew55]

God another fifteen years like this? Kill me now! 😉😁😕🙏xx

[Graham]

Yes Matt, it calls for a certain amount of tenacity (some would say bloody-mindedness), but this is just me and I won many a match of squash from 1-2 down, 3-2. I am interested to see how climate change works out plus Man Utd and the World Cup and my app...

[matthew55]

I miss steak, Macdonalds, beer, wine and conversation. And that's just today. I'm a half full kind of guy but the glass is getting smaller. 😀🤗😘😍x

[Ellie]

I'm a half full kind of guy but the glass is getting smaller.

Don't diss yourself mate - the ratios are constant, not matter how tiny your glass feels. 🤗😃😘😘

[meffordh]

That is interesting meffordh. What type of MND does your father have?

I assume that he is on a trial?

What is his current ALSFRS-4 score?

Thanks for sharing this.

Hi Graham

My father has Limb onset and his score remains at 40 again this month. For 39 months he was stable at 41 points. We send in monthly FRS scores and other monitoring info. It is not a trial but supplied to anyone on-going if the charity has the money.

[Graham]

Hi Meffordh,

That is really impressive and I am delighted for your Dad and family. It has basically stopped MND in its tracks!

Are you in the UK?

Thanks again.

[redbeak]

Sodium phenylbutyrate is available from this reputable supplier at an eye watering price: https://thesocialmedwork.com/ammonap...phenylbutyrate

Google it and you can undoubtedly find it cheaper but do your homework on suppliers. x

I have been taking TUDCA for nearly 2 years but I also started taking Sodium Butyrate in the last 6 months which I buy from amazon at a very reasonable price. The trial compound is TUDCA and Sodium PHENYLbutyrate. Does anyone know the difference between Sodium Butyrate and Sodium Phenylbutyrate? Im hoping not much but the price difference makes me think otherwise!!

[redbeak]

Hi Meffordh,

That is really impressive and I am delighted for your Dad and family. It has basically stopped MND in its tracks!

Are you in the UK?

Thanks again.

From what I have seen, new users pop up on here every so often extolling the benefits of RCH4. They never give any details on how to obtain it and when you go on their website they say they have removed the contact details due to 'abuse'. All seems very suspicious and to be treated with extreme caution.........

[Graham]

I have asked MNDA to investigate this claim redbeak. I do hope that the claim is not fraudulent. The MNDA have not removed the post and must have vetted the contributor.

[matthew55]

Beware sellers of snake oil

[Doug Carpenter]

Redbeak is correct:

All seems very suspicious and to be treated with extreme caution.........

Doug

[Admin_MND]

Thanks Graham for letting us know about this thread.

Like many of our members, we are very keen to understand more about RCH4 and to engage with the people behind it. We were hoping to meet them at our 2018 Symposium at which they were invited to share their work with the international research community in our poster presentation session, but they withdrew before the event.

We would welcome the chance to talk to them and to discuss any ongoing research they are undertaking and any validated data they are able to provide – by which we mean results that have been managed or checked by an official body, clinician or neurological centre with research credentials. In the UK this could include an MND Association funded care centre for instance. This validation is standard international protocol for researchers to ensure transparency, safety and credibility.

As such, at this present time, we still classify RCH4 as an unprovement treatment and you can read our stance on unproven treatments on our website.

As always, we urge people with or affected by MND to consult with their doctor, or other relevant professional, before making any decisions about treatment.

Thanks,

Forum Admin.

[Littlesister]

Hello All

I have seen this on the internet today Gene Therapy Program for ALS Due to C9orf72 Mutations Opening in UK
https://alsnewstoday.com/news-posts/...seases-openin/

I can't see anything on the MND Association pages about this.

Littlesister

[Ellie]

That was in the MNDA's Research Blog last month (the title rang a bell)

You can read it here

It's a good blog to subscribe to, btw. xx

[Gordan1111]

Thanks Ellie , Littlesister