andyvaughn
Distinguished member
- Joined
- Feb 12, 2008
- Messages
- 144
- Reason
- CALS
- Country
- US
- State
- ca
- City
- thousand oaks
At this risk of being booted, I am posting this here for you guys to see. You may have noted, I have been spotty in my attendance on this forum. As Jim's progression has gone on, I have become more interested in the role of advocacy, and preserving his function by whatever means possible. As many of you know, IGF1 has been seen as the holy grail of ALS treatment, but difficulty in dosing and delivery has kept IGF from the forefront of ALS therapy. A little pharmaceutical company named Insmed seemed to have solved that problem with the introduction of a drug called Iplex, which is IGF1 with a binding protein, technically speaking, IGF1BP3. Unfortunately, Iplex was removed from the worldwide market after a patent infringement lawsuit, and you may ONLY take the drug if you are an Italian citizen with ALS, and have gone thru court proceedings in that country to obtain the drug.
Now, as time progressed, I noted I am not the only CALS/PALS who wants this drug, and a group of us throughout the world have formed to find a way to get this drug.
Our group of Pals/Cals is worldwide and growing.. we are nearing daily the same benefit that the Italians currently enjoy. I have spoken with some of the Italians on Iplex, ALL report benefit (this is over 2 years of taking the drug) as well I have spoken with PALS here in the US who were lucky enough to get the drug when it was on the market, they all experienced benefit as well. If any of you have seen the film Indestructible, you know what Iplex did for Ben Byers.
I would be happy to provide anyone who would like with all the information they can possibly stand on this. There is research abstracts galore on the web showing efficacy of IGF1 in ALS - in vitro, the problem has always, again, been getting it into the body in high enough dose, minimizing the side effects, and prolonging the half life.. I haven't gone into this half heartedly, my background is research medicine, and I do believe that of all of the medications on the market today, this is the one that holds the best promise for all Pals.
I just wanted to share my work with all of you.. I hope you take the time to see our new web page, and if moved, sign our petition... know that it is in the courage of the fight for a cure that I write.. not trying to get someone to sign something they don't believe in...
Regards
Andrea - wife of Pals Jim
Now, as time progressed, I noted I am not the only CALS/PALS who wants this drug, and a group of us throughout the world have formed to find a way to get this drug.
Our group of Pals/Cals is worldwide and growing.. we are nearing daily the same benefit that the Italians currently enjoy. I have spoken with some of the Italians on Iplex, ALL report benefit (this is over 2 years of taking the drug) as well I have spoken with PALS here in the US who were lucky enough to get the drug when it was on the market, they all experienced benefit as well. If any of you have seen the film Indestructible, you know what Iplex did for Ben Byers.
I would be happy to provide anyone who would like with all the information they can possibly stand on this. There is research abstracts galore on the web showing efficacy of IGF1 in ALS - in vitro, the problem has always, again, been getting it into the body in high enough dose, minimizing the side effects, and prolonging the half life.. I haven't gone into this half heartedly, my background is research medicine, and I do believe that of all of the medications on the market today, this is the one that holds the best promise for all Pals.
I just wanted to share my work with all of you.. I hope you take the time to see our new web page, and if moved, sign our petition... know that it is in the courage of the fight for a cure that I write.. not trying to get someone to sign something they don't believe in...
Regards
Andrea - wife of Pals Jim
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