ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, March 17, 2013

Perhaps Some Smart, Energetic College Students Could Solve Some Problems

For over a decade military service has been associated with increased risk of ALS.  Yes, over a decade.

We have some big problems now.  Perhaps some bright and creative college students could find some solutions.


Marketing 101,  Political Science 101
The message about ALS in the military has not stuck.  Every year advocates go to Washington and talk with legislative staff members.  They use the story of ALS in the military as a logical lead-in to get the listener's interest and commitment for some modest DOD research investments.  Every year the staff members and legislators looked surprised and act interested.  Every year.  Year after year.   ALS in the military should be more than a quickly forgotten factoid.  This should be a source of national outrage and meaningful action.

Communications 101,  Instructional Design 101
Veterans with ALS are entitled to service-related disability benefits. Period.  Parts of the VA system didn't seem to get the memo. Stories of veterans who have difficulty getting the help to which they are entitled continue.  Time is important when you have ALS.  Energy is precious when you have ALS.  They need a low-hassle VA that delivers for them efficiently.

Pre-Med 101
Veterans continue to report having difficulty getting basic medical services related to ALS.  Bi-Pap and DPS are allowed by insurance and Medicare for civilian ALS patients.  Why would there be any question for veterans?  Civilians with ALS have access to one-stop clinics where they can see a number of specialists.  It's actually quite efficient and effective.  Why don't veterans have access to such healthcare.

Management 101
Consistency with handling of veterans' benefits often doesn't happen until an appeal is filed.  That wastes precious time for veterans dealing with the ticking ALS clock.  That wastes tax dollars.  Why can't the VA get things right the first time, every time?

Social Work 101, Common Sense 101 
We all know that military families carry a large part of the burden of military service, yet we as a nation often forget when it's time to actually do something.  When many soldiers get back home, the healing for the whole family begins.  For those with ALS, it's a different story.  Dealing with ALS is huge.  It's the most physically and emotionally difficult job that you can imagine, and spouses and children rise to the role; however, we need to give them some help.  That's just common sense.  When a young Army officer forced into retirement by ALS has to open a Paypal plea to friends and strangers to get some overnight caregiver assistance for his family, something is very wrong.  Much is revealed about the character of a nation in how it treats those who have kept its people safe.


Are there any bright students out there who can swarm on a project and come up with some clever solutions to problems of a bureaucratic morass?  We need you.

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