The ALS world is starting to change ! Little by little. The snowball has been set in motion and is picking up speed. I truly believe that we have reached a turning point in the fight against this disease.
Much work is still to be done, but we have the momentum. As I have mentioned before, patient-centric advocacy groups are leading the charge. Particularly, the organization I am ALS.
If you have not seen , this organization took to the billboards of New York City’s Times Square on 17 December 2019. In an effort to raise awareness for diseases such as ALS, Parkinson’s, Alzheimer’ s and FTD, advocates took to the streets. Braving freezing temperatures and rain , they provided a physical presence amidst the electronic background of the message seen to the right. Not just talking the talk, but walking the walk.
I will admit, I am slightly biased. For good reason. I am involved in the advocacy effort of this group. The old guard is just not getting it done. I truly hope that this changes because we need all hands on deck. What I have found is that the patient groups have the urgency of the disease at their backs. They are the ones with the most at stake: the first hand affected. They are in the trenches. Engaging those who really have the means of effecting the change we so desperately need.
It is an exciting time in the ALS realm. There is hope on the horizon. Will it be in time for me? I don’t know. But the work we are doing right now is paving the way to a world without ALS. Let’s change the world ! Let’s get shit done !!