Want to help rid the world of the beast? Help us

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Want to help rid the world of the beast? Help us

Postby TwitchyDoc on August 20th, 2014, 7:17 am

Having chatted with prof. Carvalho today, he mentioned there is a new project the goal of which is to map the ALS patients genome which would finally enable researchers to understand the MND.

I contributed 50 Euros, could be more or less...I contributed to Portugal (prof. Carvalho's area):

http://www.projectmine.com/fr/country/portugal/

Remember, the soner the ALS will be understood, the soner the cure come.

Thank you in advance. I understand you might say "Its none of my business" - please, remember on your darkest hours and imagine those people, who live in this constantly. If you can do without a few beers, consider the donation. For me, no pub this week :)
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Re: Want to help rid the world of the beast? Help us

Postby trustme78 on August 20th, 2014, 7:44 am

I contributed 50 Euros as well - location Portugal.

Use this link for the english version of the website (above is french): http://www.projectmine.com/country/portugal/
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Re: Want to help rid the world of the beast? Help us

Postby TwitchyDoc on August 20th, 2014, 7:53 am

Thank you! I trust prof. Carvalho's team and even if this got us closer to the cure by a year or two, it would be an amazing achievement.
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Re: Want to help rid the world of the beast? Help us

Postby Nytviolet on August 20th, 2014, 10:19 am

I donated to ALSA (bc of ice bucket challenge) will that help? Or should we donate to this study in particular?
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: Want to help rid the world of the beast? Help us

Postby TwitchyDoc on August 20th, 2014, 2:39 pm

nytviolet: that is another company/project. I personally donated only to this (because prof. Carvalho himself is involved and the goal is clear - analyze the genomes of patients and finally identify what is the cause).

But glad to hear that you donated ;)
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Re: Want to help rid the world of the beast? Help us

Postby leroyb on August 21st, 2014, 3:23 am

Please please please if are donating for Ice Bucket challenge get people to donate to ALSTDI and not ALSA. ALSTDI are light years ahead of any other organisation at the moment.
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Re: Want to help rid the world of the beast? Help us

Postby TwitchyDoc on August 21st, 2014, 3:28 am

ALSTDI has not shown any progress and there are rumours (even on their own forums) that their research stopped.

If you want to help, donate to what I presented here - the ALS genome will provide crucial information that can be then used for all researches around the world and substantially quicken the process. Once we know the genetics behind sporadic ALS, we can target the treatment.
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Re: Want to help rid the world of the beast? Help us

Postby leroyb on August 21st, 2014, 5:01 am

Definitely not stopped:

http://www.als.net/ips/prescreen/?f=hr

Also they are working on targeted glucocorticoids right now and imo they will prove to be the most significant treatment yet.

You could level "no progress" at anyone given that 160 clinical trials and billions of dollars later we have....riluzole.

But obviously all these organisations are worth donating to.
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Re: Want to help rid the world of the beast? Help us

Postby Nytviolet on August 23rd, 2014, 5:15 pm

Has anyone read the letter by the wife of Toto bassist Mike Porcaro? She stated that her husband has seen improvements using a particular therapy but I'm unsure which Pharmaceutical corp is behind this. If interested in reading the article here it is: http://proavs.wix.com/alstreatment
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: Want to help rid the world of the beast? Help us

Postby Nytviolet on August 23rd, 2014, 10:44 pm

Another issue with "ice bucket" I've noticed; many people seem to feel that posting a video of themselves being doused with ice water causes money to magically materialize from some unknown source. For instance, I have several cousins in Utah. They lined up about 7/8 of their children / nieces / nephews and had a large back-hoe dump water on them all. When I commented on "wow you must have given quite a bit of money", they were CLUELESS. Regardless of whether you donate to ALSA or ALSTDI, be sure to spread the word that the chalkenge means zilch without a donation behind it.
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: Want to help rid the world of the beast? Help us

Postby JOHN1189KY on August 24th, 2014, 12:53 am

I donated to the ALSA last night. I indicated on the donation form that my contribution be used specifically for ALS research. I noticed that they have raised over 68 million dollars, compared to the same time frame last year I believe it was only around 2 million dollars. So it appears to be having a beneficial effect. I truly hope they find some type of effective treatment for this devastating disease.
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Re: Want to help rid the world of the beast? Help us

Postby Nytviolet on August 24th, 2014, 12:11 pm

Thank you for donating...every dollar counts. The best part is that people are now aware of this disease! Time for a cure (or at least a way to make it a manageable disease and slow/stop progression). I've been spreading the word on FB. Thanks for your generosity :)
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