I am James Clingman
living with ALS
South Carolina
Let's hope and pray ALS will one day soon get the respect it certainly deserves, in the forms of financial support for its victims, legislative support, FDA approval, research grants, and education.
ALS is the Rodney Dangerfield of diseases. It gets no respect. Despite batting 1000 when it comes to deaths, albeit some of its victims get extra innings and other delays, no one has been cured nor has anyone survived the relentless scourge of ALS. You would think that is enough to
command full respect from everyone. Sadly, that is not the case.
Having no respect for a disease that has a one hundred percent kill rate, a life sentence of 2-5
years after diagnosis, and no medical hope is a frightening prospect that screams for respect and deference. Yet ALS continues to find itself very low on the agendas of funding sources, politicians, and the general public. Admittedly, there are cases in which cessation and reversal of the debilitative symptoms have been documented, but only in a relative few, which should cause more than a handful of doctors to beat the drum and say, “How about a little more respect?”
ALS is tantamount to a little child in the midst of a huge throng of adults trying to get everyone to pay attention to them. ALS must have more attention-grabbing headlines and lead story status, even to the point of being obsequious; we will take whatever we can get at this point.
So, here’s to all the foot soldiers and advocates, doctors and nurses, researchers and trial
participants, family members and caregivers, and those tens of thousands who are trapped inside our bodies, facing an enemy that has a 100% kill rate, much love and respect to you. Let’s hope and pray ALS will one day soon get the respect it certainly deserves, in the forms of financial support for its victims, legislative support, FDA approval, research grants, and education.
