| Index | Recent Threads | Unanswered Threads | Who's Active | Guidelines | Search |
 |
World Community Grid Forums
Category: Completed Research
Forum: Help Cure Muscular Dystrophy - Phase 2 Forum
Thread: Interesting news about Muscular Dystrophy |
| No member browsing this thread |
|
Thread Status: Active Total posts in this thread: 21
|
|
| Author |
|
|
Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Hello Hamiltonserver
I'm in the same boat...although my DMD son is still 3-1/2 years young and still walking (doesn't talk though). I pray that he will finally learn to talk so that I can have a conversation with him soon. I also fervently pray that something comes of this research such that something is available for him in time. All of the processing time on both of my server class machines has been devoted solely to this project. I've left the machines running since the putative completion of HCMD2, but they have long since run out of tasks for this project. Perhaps there will be some good karma to come of this and it will result in some sort of positive development for my son. At least, that is what I tell myself to justify leaving the machines going 24x7. I am greatly saddened to hear of the loss of your son, especially since I am now facing the same prospective outcome for my own son. |
||
|
|
alged
Master Cruncher FRANCE Joined: Jun 12, 2009 Post Count: 2346 Status: Offline Project Badges: 
|
Hello Hamiltonserver
----------------------------------------I hope yu still read that thread.Thks for yr help to that research and we share in sorrow for yur son ... and the very hope that scientists find something to stop that cruel disease Hi kismetix I am sure Hamiltonserver will join me to tell you:DO NOT SURRENDER ! Yur son still need yur loving care and even he is not talking yet there is surely a kind of "communication" between yu and him Conversation is only a part of communication My own son is 34 and still at home ; born with a neuro-muscular disease and deafness he lost walking at 16 . But as we suspected a problem we -the parents-begin to talk and sign with him , and later we learned LSF (french sign language) LSF is now the fisrt language for him and french for some writing and reading .And he got friends ! Medecine progress allows them to enjoy life longer than before and every day is a victory. HCMD was my first project but its'ending.No tasks for some weeks now .Others projects as HFCC and Go Fight Against Malaria requires our crunching help sheers!  |
||
|
|
Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Hello Alged
----------------------------------------Thanks for your words of encouragement, and yes I will never give up on finding some way to cure my son! Interesting that you mention the sign language, and I wonder if I should start learning that myself. In addition to the DMD, it looks like my son has ADD as well so it could be quite a long term process. (This cruel disease just keeps on giving.) But before anything else, I am just going to try to get him potty trained one way or the other. This small victory will be a very big thing for the both of us.. Best Mike [Edit 1 times, last edit by Former Member at Nov 22, 2012 3:10:36 AM] |
||
|
|
Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
BBC 23 May 2014 "Muscular dystrophy drug approval 'recommended' in EU"
http://www.bbc.com/news/health-27538198 |
||
|
|
Barnsley_Tatts
Senior Cruncher Joined: Nov 3, 2005 Post Count: 280 Status: Offline Project Badges: 
|
BBC 23 May 2014 "Muscular dystrophy drug approval 'recommended' in EU" http://www.bbc.com/news/health-27538198 I wonder. I would love to know if any of the work done by crunchers on the Grid helped with this medicine If it was, we could all feel immensely proud, and something to brag about to friends & colleagues.  |
||
|
|
alged
Master Cruncher FRANCE Joined: Jun 12, 2009 Post Count: 2346 Status: Offline Project Badges:
|
I am also eager to know more news abt that drug.
----------------------------------------For long i have been member of AFM-TELETHON in France and i started crunching when they promoted and launched Decrypthon to take part in HCMD; as far as i know they did not utter a word about it. Hopely the research accumulated through HCMD1&2 might pave the way to a cure….for more kinds of MD |
||
|
|
Viktors
Former World Community Grid Tech Joined: Sep 20, 2004 Post Count: 653 Status: Offline Project Badges: 
|
It is nice to see progress like this in medicine. The work on finding Ataluren was done by other resaerchers who started before we even ran the Muscular Dystrophy projects on World Community Grid and this illustrates the patience we have to have for this kind of research. The Help Cure Muscular Dystrophy project researchers are still working on analyzing the huge voilume of data we computed for them. They are not looking for specific drugs, but rather are helping scientists understand the relationships and functions of all of the proteins involved with the many neuromuscular diseases. The new drug approved addresses one specific gene mutation. There is still a lot of research to do.. When they understand more about the various forms of neuromuscular disease, perhaps some researchers will propose more World Community Grid projects to search for drugs to control specific target molecules, and after the required testing and trials, these might also lead to more cures for these diseases.
|
||
|
|
Barnsley_Tatts
Senior Cruncher Joined: Nov 3, 2005 Post Count: 280 Status: Offline Project Badges:
|
It is nice to see progress like this in medicine. The work on finding Ataluren was done by other resaerchers who started before we even ran the Muscular Dystrophy projects on World Community Grid and this illustrates the patience we have to have for this kind of research. The Help Cure Muscular Dystrophy project researchers are still working on analyzing the huge voilume of data we computed for them. They are not looking for specific drugs, but rather are helping scientists understand the relationships and functions of all of the proteins involved with the many neuromuscular diseases. The new drug approved addresses one specific gene mutation. There is still a lot of research to do.. When they understand more about the various forms of neuromuscular disease, perhaps some researchers will propose more World Community Grid projects to search for drugs to control specific target molecules, and after the required testing and trials, these might also lead to more cures for these diseases. Thanks for that! It's nice to know either way. :) |
||
|
|
alged
Master Cruncher FRANCE Joined: Jun 12, 2009 Post Count: 2346 Status: Offline Project Badges:
|
Here talking again abt Alturen
----------------------------------------cure for myopathy In fact Alturen recommended in may by The European Medecines Agency herehas now-since early August-received the green light from Brussels to be marketed for one year even before the end of all the scientific tests. The price is not known for the moment. The article of Science&Avenir above quote M.BRAUN science head at AFM-THELETON . AFM-Telethon promoted the project HCMD1&2 |
||
|
|
robertmiles
Senior Cruncher US Joined: Apr 16, 2008 Post Count: 443 Status: Offline Project Badges:
|
BioMarin Gets Complete Response Letter From FDA For Kyndrisa - Quick Facts
----------------------------------------http://www.rttnews.com/2600319/biomarin-gets-...uick-facts.aspx?type=corp Do any of you know whether the Complete Response Letter from the FDA indicate a final rejection, or only not enough evidence yet? [Edit 1 times, last edit by robertmiles at Jan 14, 2016 9:12:15 PM] |
||
|
|
|