Chapter 16: A Team Divided
Competing strategies threaten to tear apart the already fragile alliance.
Wind the clock back 22 years, I had just landed in Kirksville, Missouri, for college football two-a-days and I knew no-one else on the team. When you go through something as intense as the collegiate athletic experience you learn to bond with your teammates quickly or you don’t survive, simple as that (I imagine military training to be similar in this regard). But that same intensity extorts other traits too: pride, competitiveness, tribal instinct. Close friends outside of practice took their rightful places on offense or defense and went at each other’s throats for the next two to three hours. There was a definite sense of animosity between the two factions. It was so palpable that a mere discourtesy on the field could ignite the powder keg, sending roughly fifty young men, governed solely by their ego, into a testosterone-induced kamikaze charge against the other fifty.
Nonetheless, after practice and come game-time, you’d better believe both camps came together and acted as one team to defeat the real enemy. Fast forward to present day, I’ve been living with ALS most likely for the past year now, and the landscape feels eerily similar to my football days with the exception that the intrateams rarely come together to defeat that common foe; rather they fight amongst themselves. And it’s a big problem.
I have a friend who helps me with my various gym owner needs as she is a commercial fitness consultant, and that friend has ties to Augie Nieto, Life Fitness founder, industry mogul and ALS warrior. Early on, not long after my diagnosis, she introduced me to his foundation, Augie’s Quest. Full disclosure, this blog post will also be featured in the organization’s monthly e-newsletter. Their big fundraising event, built around fitness for obvious reasons, is an annual “Race to Cure ALS.” While this horrible disease has taken away my ability to run, it has shown mercy on my capacity to write and thus I’ve been contributing in that way for the organization ever since.
Aligning myself with Augie’s Quest was a no brainer for two reasons. First, we share the same mission to bring the benefits of health and exercise into our clients’ lives. There’s an added irony to ALS afflicting both Augie and me, given our primal nature to be active. Second, if we don’t find a cure we are most certainly going to die. Finding a cure, however, is highly unlikely unless we find a way to get more resources to research. And as it happens, research is Augie’s Quest’s top priority.
In the spirit of March Madness (and my proclivity for sports analogies) let’s meet some of the other players before passing the ball back to Augie.
For starters (pun intended), you have some organizations that are more focused on defense. Team Gleason, whom we have done some fundraising for, is an example of this type of player. They focus more on quality of life. Excelling in technology, Gleason has already assisted me in researching, obtaining and navigating speech devices. They are the best at what they do and the man who started it all is an inspiration to so many.
Also playing defense are the local ALSA chapters, in our case the Mid-America Chapter. The primary responsibility of these regional institutions is to enhance patient care. Our chapter has already advocated on our behalf, holding our local clinic accountable to a higher standard.
Next, you have your full-court press package and transition offense. These orgs, such as I Am ALS and No More Excuses are always in attack mode and constantly assert pressure where needed. They understand the urgency of our plight and are subsequently built for speed. With a knack for navigating Capitol Hill, legislation, and bureaucracy in general, these watchdogs are fighting to hold leadership accountable and enact laws aimed at funding and gaining ACCESS to the (albeit few) promising treatments that are already out there.
Last, you have your sharp shooters, aka research: Healey Center for ALS, NEALS, ALS Therapy Development and of course the latter’s champion, Augie’s Quest. These long bombers never pass up an open look and take shot after shot after shot and will continue to do so until we find a cure.
But we aren’t feeding our shooters the ball!
And to compound that issue, despite their unique roles, talents, and offensive or defensive skill sets, not all of the aforementioned operations are collectively playing on the same team. Not even remotely. Such is the tumultuous and fractured landscape of present-day ALS advocacy that my wife and I almost got ourselves excommunicated from one group because we tried to find likeminded allies within another! (We are active participants and supporters of all the above organizations, by the way, which is why they were the ones mentioned).
It is my belief that we absolutely need to have good “defense.” Not everyone has the resources to handicap their home, go on one last trip, or acquire the necessary equipment to hold onto some semblance of independence. ALS clinics are being overwhelmed right now and need our support too. Did you know that cases are on the rise? And until we have that coveted elixir, pALS will go on living for a period before they die and we have an obligation to make that life as palliative as humanly possible.
With that being said, “defense” is not what’s going to win this game (to put it morbidly). Not when we are playing from behind. And make no mistake, we are LOSING to ALS right now. In blowout fashion no less. Furthermore, unless we can all come together as a united front we are doomed to play a perpetual game of “defense.”
What we need right now is more shots on goal. We need more “offense” in the forms of research and access to the subsequent therapies provided from said research. It’s that simple. But at this juncture, the funding is insufficient. And in some cases monies already raised aren’t finding the proper channels, at least not in the magnitude necessary to actually save lives.
Living with ALS is like being in some Bizarro world where you have all these so-called leaders whose baseline metric for policy somehow does not begin at “how do we save the lives of Americans who are 100% going to die a brutal and premature death?” Failing that litmus test should be an obvious non-starter.
Because you know what I want even more than a power wheelchair? A chance to see my two little angels grow up.
Let’s get it together, ALS advocates.
IMPORTANT UPDATE: Along with our amazing team of friends, Jamie and I are happy to introduce to you a new player in ALS; Flex On ALS. We want to be part of the solution and bring together all ALS warriors in this life or death fight. This is our response.
Our organizations mission has several key objectives…
Fundraise for ALS organizations who are on the offensive (focused on research or expanded access).
Be the definitive resource for effective exercise regimens for pALS at all stages of progression.
Fundraise for Scott’s expensive medical care, handicapping of the home and travel.
Fundraise for Scott’s two daughters education.
Serve as a collection for all of Scott’s writing as he documents his journey with ALS
We have included the link to the now up and running web site. We will be updating it A LOT over the next month as we flesh out the rest of our content and tools for advocacy. Please do us the honor of giving it a tour. Thank you!