Joe Collins, ALS United Illinois Ambassador
Ambassadors are key volunteers who have demonstrated commitment to the cause by their involvement in multiple capacities with passion for our mission and the people we serve. New ambassador Joe Collins shared with us about his experiences.
In 2014, my beautiful mom was diagnosed with ALS. Her progression was slow and she was a fighter. From the very beginning of her battle, she told anyone who would listen, that she “wanted to be here for as long as possible because each day means another day with my family.” Family was everything to mom, or Grammy, as most people came to know her after she took on the most significant role
of her life.
At a certain point it became obvious that mom’s true calling in life was that of a grandmother. She was born for that role and nothing gave her greater joy than being Grammy. She was always, always taking care of us. It’s hard to imagine anything she would not do to take care of her family.
We had to give Grammy back to the Lord on May 24, 2020. And although it’s impossible not to think of her and miss her every day, she reminds us constantly that she is still with us. In fact, it’s no exaggeration to say that on many days, we believe we’ve felt and experienced her taking care of us in ways greater than she was ever capable of doing before May 24, 2020.
To be an Ambassador for ALS United Illinois means so many things and elicits several wonderful emotions. My first thought is one of gratitude for having been selected. I’m absolutely honored knowing that I can take on perhaps a more significant role in the lives of those living with ALS throughout this entire territory. I’ve connected with individuals living with ALS and their families from Rockford to Peoria to Champaign, back to Chicago and everywhere in between. What greater honor could there be for any of us touched in any way by this dreadful disease?
When considering what I hope to accomplish in the fight against ALS, a lot comes to mind, but two things stand out for me: The first is that I want to play a significant role in raising the levels of ALS awareness, education, and identification to the point that we as a community, and as a nation, can shorten the current mean time from symptom onset, and/or first presenting in a healthcare provider’s office, to diagnosis.
Until we find a cure – and we will find a cure – we must be able to identify, diagnose, and treat the disease much sooner! This is indisputable. Although we have a long way to go in both the quantity and efficacy of available ALS therapies, studies have already proven that the earlier individuals living with ALS are started on therapies, the better their outcomes.
Therefore, identifying & diagnosing earlier is the best thing we can do to provide more precious time for our loved ones. And not just because it means more quality time with us before the disease progresses to more debilitating stages, but because each day is another day closer to that cure. With the advent of gene therapies and the increased ability to identify, target, and treat specific mutated genes that play a role in ALS, each day added by identifying, diagnosing, and treating the disease earlier is another day closer to that cure.
And second, because I’ve seen what this disease can do to people and families – not just physically and financially, but in all the other ways each of us know far too well – I would also like to play a significant role in finding new ways to ease these burdens for people living with ALS as well as their families and caregivers.
I don’t pretend to have figured this one out. But until I do, I know that I have these opportunities right in front of me by serving local individuals living with ALS and families via our current advocacy efforts.