Sunday, November 30, 2008

Where Is Our National Outrage?

People with a terminal disease resort to self-reporting their results on a spreadsheet. Why is that?

We have thrown billions and billions of dollars in the last few weeks at problems that affect our bank accounts and retirement plans and mortgages and cures for financial institutions and their executives.

For a disease that kills everyman, we have spreadsheets and volunteer efforts. It's not because those grass-roots volunteers think they're smarter than the medical establishment. It's because the establishment is slow and unresponsive. We should be ashamed.

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.

Tuesday, November 11, 2008

Why The Secrecy About ALS?

Here's an interesting experiment.

Go to to visit the site of the Association of Healthcare Journalists. That's the professional organization for all of those serious print and broadcast media journalists. Browse around. Try Resources, Tip Sheets. Use the search box to find materials about ALS... or amyotrophic... or Gehrig's... or motor neuron disease...

It's no wonder this disease doesn't get any attention. We've not left any clues or ideas for those with the power of the pen or microphone. Great Caesar's ghost!
Where is the ALS p.r. machine?

Friday, November 7, 2008

It's Your America. Here's A Change We Need!

Since they asked, let's spread the word and let our next President know that we need change. We need to find the cause of ALS. That should be very do-able for a country that puts its mind and necessary resources to the problem.

That's change that will save lives and heartache and money.

Is there a more needed change? I think not.

Please submit your thoughts at the link above, and let's put America on a mission to figure ALS out. We have had 12 Presidents since Lou Gehrig died. Let the 13th know that we want to change the prognosis for ALS in his first term. Yes, we can... with his leadership and commitment.