Persist

Sir Winston Churchill once said, “If you are going through hell, keep going.” He should know!

Just got news that a previously promising, out-of-the-box clinical trial test for mitigating the effects of Duchenne without the use of steroids has been shut down in its phase 3 due to inconsequential results. That news is particularly worrisome for me and our family because grandson Hayes was participating in that clinical trial.

To my knowledge, there are no other highly publicized clinical trials beyond phase 1 going on without an emphasis on steroidal use which has its own set of undesirable issues.

What next? To pause, think, and pray … not necessarily in that order.

The COVID-19 pandemic and civil authorities’ incoherent responses to managing its disruptive and deadly effects have made 2020 a year to forget. Unfortunately, we now understand that some part of 2021 may not be much better.

What to do? Pause, think, and pray … again, not necessarily in that order.

But beyond thoughtful and prayerful contemplation, we must act. To act, we must persist.

Let’s not give up on any seemingly overwhelming fronts in our personal lives or in the life of our nation.

 For our nation of a free People, let’s rethink, then act upon, personal behavior that will curtail the spread of the virus. Even if that means changing course and taking steps that we personally resisted in the past … let’s not insist on being right but, rather, do the right things. Wear a mask, keep social distancing, plan necessary trips out into the public, remain informed, be there for others, and find new sources of personal joy and inner strength.

For the Duchenne community, we families should pick up some of the slack towards mitigating the horrid effects of the disease and no longer wait exclusively on pharmaceutical companies, researchers and doctors to organically come up with a magic bullet but rather elevate our own learning curves, increase public discourse on the subject, challenge smart constituents to be smarter with a more robust curiosity about finding a cure, and for all of us to … PERSIST … as we each go through the hell that only Duchenne as a dream killer can promulgate.

Indeed, pause, think and pray … but, moreover, let’s renew our collective call to action to persist in finding an end to Duchenne.

Kindly,

Papa in Tennessee