The ALS is for

May 22, 2011. Happy Birthday to my one-year-old daughter, Sabina!

This is the petition I sent to Congress this week. I urge you to do the same. The first paragraph is mine, the rest is cut & paste. I sent it snail-mail for more effect.

Dear Senator,

As a patient recently diagnosed with ALS, I have found out that I may die in 3-5 years, and if not, will most likely end up "locked in" like Stephen Hawking. This is obviously a deeply personal issue for me and my family, as I do not want my two young daughters to grow up without knowing me. I was thus devastated to learn that Congress is considering cutting existing funding to find a treatment or cure for this "orphan disease".

I urge you to work with your colleagues in the House to continue funding in FY 2011 for the ALS Research Program (ALSRP) at the Department of Defense.  

Some have proposed to eliminate medical research programs at the DOD because they are not relevant to the military.  However, this vital program is designed to find a treatment for Lou Gehrig’s Disease (ALS, Amyotrophic Lateral Sclerosis), a disease that strikes our military heroes at approximately twice the rate as the general public according to studies supported by the NIH, Department of Defense, Department of Veterans Affairs and Harvard University.  

Today, those on active duty and those veterans in our state who are living with ALS are fighting a war in which they have no way to defend themselves.  As the disease progresses, it robs them of the ability to move their muscles.  They no longer can walk, move their arms or even blink an eyelid or breathe on their own.  They become trapped in a body they no longer can control; isolated and awake, aware of the world around them, yet unable to do anything about it.  There is no effective treatment for the disease and it is fatal in just two to five years after diagnosis.  However, the ALSRP is specifically designed to find a treatment for ALS.  

In fact, the program fills a gap in the drug development pipeline in which limited funding has prevented promising treatments from reaching patients.  Moreover, the ALSRP provides funding to researchers on a competitive grant basis and researchers here in our state are eligible to receive funding from the program.  

Congress has appropriated funding for the ALSRP in each of the past two years, including $7.5 million in FY 2010.  However, this funding was only able to support eight projects even though nearly 150 were submitted in 2010.  Therefore, I request that you work with your colleagues to support a $10 million appropriation in FY 2011.  This is the funding level that the House Appropriations Committee included in their version of the FY 2011 DOD Appropriations bill last year.  It is urgently needed to continue this program, which will benefit our military veterans and all people whose lives have been touched by ALS.  

I hope you will support our troops and your constituents in our state.   Help us fight for our heroes in the military as they continue their war against ALS.  
 

Sincerely,

jaws

Singularity Hub recently reported about a study funded by the Muscular Distrophy Association. According to the report: Prevention of Muscle Aging by Myofiber-Associated Satellite Cell Transplantation, published in Science Magazine, mice with atrophied muscles that were injected with stem cells regrew those muscles to twice their original size.

Not only did the mice maintain the muscle growth for two years, but they also did not end up with tumors or cancer. Remembering that lab mice live for only four years, this is a remarkable achievement.

So when do the human trials begin? Sign me up!

If/when I end up needing a wheelchair, I've decided to skip that and go right to the robocopesque exoskeleton. I mean, seriously. Stephen Hawking on steroids. How cool would that be? That, along with some Darth Vader voice banking, and I would be fulfilling most of my childhood fantasies. Who knew that ALS might end up being a cool thing after all?

I mean, don't get me wrong. It's not that I particularly enjoy the idea of losing all my muscle mass to the point of requiring augmentation to even pick up a fork. But if I'm going down that road, might as well go out in style.

So this particular get-up comes out of Japan (duh). It currently can be leased for about $1000 a month. Although I'd like to see the price come down to about $100 a month, I imagine there are probably many people with ALS who would line up for this even now, if they knew about it.

Of course, I understand the grim reality, that due to the progressive nature of the degeneration involved, there's probably on a small window of opportunity to use this device before it's (presumably) unable to detect the required muscle movements to respond. However, I imagine as well that it's not insurmountable, and with sensitive enough sensors (or brainwave scanning), maybe even Professor Hawking  could walk again.

But don't take my word for it; take a look yourself...

You can go over to the Singularity Hub to read more about Robo Suit Hal, the exoskeleton from Cyberdyne