What does this mean?
- Thread starter brooksea
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TedH5
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What I believe it means is that if it proves safe they should be able to get gov't grants to continue the research and help with cutting through some red tape. Bottom line is ALS is considered an Orphan disease because it is so rare. Therefore there is not a lot of money to be made in a cure for ALS because there will not be a broad market for it so the gov't is willing to help pitch in some potential grant money and help fast track the approval process. Please keep in mind that this is more about the future then now. This will not come into play until they actually start doing tests to see if it actuallly helps ALS patients. Right now they are still in the safety phase. Today they did patient #10 a month from today is patient #11 which is me and in April they will do patient #12. Then the FDA will review the research and results and hopefully give them the approval to do patients 13 - 18 which will be injections in the cervical area of the spine. First one side and then both sides. After that data is reviewed then perhaps they can move on to the next phase to test to see if it has a positive impact on ALS patients. So as you can see this is a long way from having a beneficial impact for ALS patients. With the Orphan status if it proves safe it can help move the process along.
rose
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Ted,
It is so cool that you're a participant in this trial. I even feel cool by association lol (6 degrees of separation)
Thank you for being willing to do this. I wish you the best.
It is so cool that you're a participant in this trial. I even feel cool by association lol (6 degrees of separation)
Thank you for being willing to do this. I wish you the best.
TedH5
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Thanks for all of the support. A week from today is the date. Have to be at the hospital at 5:30 am on the 9th and if all goes well I should be able to come home on the 13th. Prayers are always welcome.
LizT
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if i could, Ted, I would give you a medal for your courage and your willingness to be a "guinnea pig" so maybe one day we can have a treatment or cure for this beast. It takes a very special person to do this, and i am so grateful that you have chosen to do this. I believe there is a special place in heaven for all our PALS, but for you, maybe you will get to be a king!
ALS occurs 5 out of every 100,000 people worldwide. Over time, people with ALS progressively lose the ability to function and care for themselves. Death often occurs within 3 - 5 years of diagnosis. About 25% of patients survive for more than 5 years after diagnosis. I know this is very hard for you but I also know that this will be fulfilling. You have my courage. 
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