Wednesday, November 12, 2008


While on my daily watch for something positive to shout about I came across this caregivers plea. This is Tatiana’s story so read on… I support this petition so people who want and need this drug can have access. I supported her, I hope you will to…

Six months ago my husband was diagnosed with ALS (Lou Gehrig’s disease). There is no known cure or treatment. Once diagnosed, the patient is essentially handed a death sentence. I would do anything to help him. I need a huge favor and your help in order to get another chance for my husband and thousands of other people with ALS another chance and hope. We cannot wait, every week every day counts. In 2006, the FDA approved a drug called IPLEX manufactured by Insmed. There followed a number of anecdotal claims stating that IPLEX was effective in slowing down progression and possibly reversing some of the effects of ALS, as well as HIV and burn victims..Unfortunately, Genentech took Insmed to court, for patent infringement. The case was settled in March 2007 causing IPLEX to be pulled off the market world-wide. Only a small study now exists in Italy because of the involvement of Italian Ministry of Health. These results are due in the Fall or early winter, and many positive results have been reported in the Italian media. The court system in Italy officially recognizes these positive results. From a statement on Insmed’s website “As part of this settlement, we are allowed to develop IPLEX™ for specific indications. ALS is not one of the permitted indications.” What can you do? We found this petition on the internet to “Allow IPLEX to be distributed to ALS patients and burn victims”. I’m asking you to sign this petition to help us reach our goal of 10,000 signatures to allow IPLEX to be distributed to ALS patients,The following is the link to this petition.
Thank you very much.

So if you have a moment, look at the site or head straight to the petition. We need access to every possible treatment that could save any life. It only takes a minute, but you could make a huge difference in the life of one family — and many others.

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