On Tuesday, a whole bunch of PALS and CALS and others who care are meeting with their representatives in Congress or the Senate in Washington DC about increasing funding for ALS. We need to find causes and we need to find a cure.
A friend of mine, Peter Shankman, (www.shankman.com) going to send out information about what is going on to his list of people tomorrow on HARO (www.helpareporter.com) , some of whom are looking for story ideas about ALS and what is going on during this week. If you are from his list and wound up here, welcome. There is much to talk about related to this disease, and if you are interested in our story, well, you can find pretty much the whole tale by reviewing this blog starting with the first post from back in January of this year. It chronicles in detail what we have gone through and what we continue to go through as well as lots of side-bars from me about things that need to be spoken about when dealing with this disease.
So many people have told me that this blog has helped them in some way, I can't even begin to count them, and so I keep putting it out there, hoping it will help yet more. Surprisingly to me, most of these people are not affected "directly" by ALS, but have found a message of hope, strength and the reminder that we all need to live this life while we have it and never take anything for granted. Unfortunately, there are thousands of stories that are like mine: people dealing with this disease today, and hundreds of thousands more that have already concluded, yet live on in the hearts of families...All are worth telling.
That being said..there is real NEWS related to this. Here are some angles, some of which could really use a good investigative reporter to get their teeth into.
1) Why is the military now paying any veteran diagnosed with ALS 100% expenses (which cost up to $250,000/year in later stages) and paying things like $12K/mo for living expenses, $75K for housing modifications, 100% for ventilators, wheelchairs, etc. Yet they are not investing in a cure or investigating causes. People with military service are much more likely than the general public to get this disease, but why? They are essentially paying people off, because they don't want to rock the boat and get cut off now that they are getting help (whether or not this fear is founded or unfounded, I have no idea.) But what if something the military is doing today is causing people to come down with ALS later. Why won't they find out? Why will they be prepared to invest hundreds of millions in "care" but nothing in a cure or in it's origins? I want to know, and so do thousands of others.
2) . IPLEX is a promising drug for treatment of ALS. There is a "big pharma" lawsuit that is preventing the manufacturer of this drug from making it available to people that want to try it under a "compassionate use" option which allows people to file a petition with the FDA called an IND (Investigational New Drug) petition. I blogged about it (on March 6 and March 12). Right now, because of political pressure, the Italian Government is the only group that can actually legally get IPLEX to treat ALS. There is lots of weird BS surrounding this drug. Would be a great investigative piece for some bulldog reporter to latch on to and expose. Eddie Esparza has been the chief advocate for securing IPLEX and if you are interested in this angle, I can connect you with him, just leave me a message note on the blog.
3) Since the “swine flu” is so hot, yet such a stupid flash in the pan, I think there’s an angle there. Obama asked congress for an additional $1.5 Billion to combat H1N1 on top of the $6 Billion that is already earmarked for any pandemic outbreak. How many people has swine flu affected? How many has it killed? By contrast, ALS has $45 Million earmarked. .006 of the total. Six dollars in every thousand dollars. It is pathetic and wrong. I need to get my stats right, because I have seen different numbers, but something like 300,000 people have ALS and are going to die from it if no treatment and cure is found. Right now it is 100% fatal. It is not a matter of whether you will die, it is a matter of when. Usually 2 – 3 years post diagnosis. I met the president of ALS –TDI last year in February in Hawaii. He did not have ALS at the time, and seemed perfectly healthy, though several people from his family had died from it. He contracted it and died less than a year later on February 9 of this year:
http://www.als.net/articles/articleDetail.asp?articleID=5346
4) If you are not a reporter, but are willing to invest a few minutes to help us, there is a simple form you can fill out on the link below that will allow you to send your congressman a form letter requesting more funding and awareness for ALS.
http://capwiz.com/alsa/issues/alert/?alertid=13304536&PROCESS=Take+Action
5) If you want a reason YOU should care about this disease, and don't mind a highly charged and somewhat direct viewpoint...read my post from February 25th and the 22nd if you can muster the energy.
here's the link: http://alschronicle.blogspot.com/2009_02_22_archive.html
Thank you very much,
Bill
Monday, May 11, 2009
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