Link to ALS/Iplex activism forum

[andyvaughn]

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

 

[kelly]

iplex

Andrea,
My husband has been wanting Iplex as well. I feel at a loss how to even begin to access this drug. I am amazed at the role you have taken in starting the petition. I have signed the petition and passed it on to my friends. Andrew has had bulbar onset ALS for two years. Speech is still somewhat understandable, using chair for most of the time. His hands have lost all most all of fine motor skills. (he is 41)I feel like things are really picking up speed. Please pass on any information...or let me know if I can help via the computer. Fondly, KR

 

[andyvaughn]

I am sorry Kelly, this disease is such an unthinkable monster... my husband too has bulbar onset. It is hard to even begin to comprehend, but this all started for us only 6 months ago, with slurred speech. I found this forum, and everyone urged us to a neuro.. 2/20/08 we got those unthinkable words "You have ALS". Today he uses a wheelchair, I bathe/dress him, cut his food, he chokes on everything, only 6 months later. To me it is such a miscarriage of justice that Iplex lies out of our reach - I can't sit by and let this go. Anyone who wants to be part of our email group can reach out to me... at this point the volume of ideas and information being passed is inappropriate to continue to post on the forums.. we aren't trying to hijack any one forum, but we are trying to be vocal enough so that people know there is an international group of Pals/Cals working together on the common goal. We aren't a secret society - or an exclusive club, just a group of Pals/Cals banding together to help save our lives. So I just continue to put it out there that if anyone wants to be added, send me an email, we will get you on the group update list.
I hope to see the day that we all get fair access to therapeutics.. but until then my conscious won't let me rest .. much work to be done.
Andrea - wife of Pals Jim.

 

[kelly]

iplex

You truly summed it up when you call it the "unthinkable monster"! Sounds like we are in the same boat with care giving. I am so thankful that you are speaking out and trying to access Iplex. I will send out mass emails if needed. Keep me posted. I really want to help our husbands...our families...our lives. Fondly, Kelly