Too Much Clutter

Wow. 2020 has presented a lot of danger and other challenges. No need to list them here … we all are affected.

What are the common denominators?  Unforeseeable.  Difficult to understand the source. Lives have changed abruptly. People have reacted differently. Families have re-evaluated their priorities. The “experts” are not in agreement. Lives are lost.

Sort of sounds like Duchenne, doesn’t it. Well, what do we do about it?

First, pray that whatever course of action we take within the Duchenne community is our effort not to be right, necessarily, but to do the right thing. To focus on what is needed most. 

For Duchenne, organizations like Parent Project Muscular Dystrophy  and Cure Duchenne are doing a wonderful job of bringing together the Duchenne families with the medical experts, pharmaceutical company representatives, support organizations, and legacy Duchenne families who so freely share their experiences with the monster. Kudos. Keep up the good work!

For the researchers, please, regain focus during this terrible time of turmoil and distraction and double up your efforts to find mitigation treatments and even a cure for Duchenne.

For the pharmaceutical companies, be thinking ahead as to how you can help with treatments coming down the pike to be affordable to ordinary families. 

For the legislators, spread your personal interest in other rare diseases to include Duchenne. Its dream-killing features should make Duchenne enemy number one, at least among those 1:3500 born each year with the odd genetic muscular defect.

I believe that focusing on the right thing to do vs. arguing over which lives matter most should help us Americans deal better with not only the multiple cultural upsets of 2020 but also with finding a cure to Duchenne. Please, help. 

Kindly yours,

Papa in Tennessee