So Close

Today is winter solstice … the shortest day of the year. Snow is predicted for Christmas Eve later this week. Families are making decisions as to how they will deal with masks, social distancing, and just gathering in general during the Holidays while a germ has ended the lives of over 315,000 Americans since March. What a year. 

At least hope is revived with the distribution of two approved vaccines going on as this is written. Thank you Pfizer and Moderna. Please help as many Americans as possible before it is too late for some of them. We still have a distance to go to beat this pandemic.

Tonight, I and neighbors had an every 400 years (or 800 years, depending on sources) opportunity to observe “the great conjunction” of Saturn and Jupiter in the western sky.  Those huge spheres of gas and ice appeared to be sitting on top of each other. In reality, they are hundreds of millions of miles apart … our perspective down here just makes those two large heavenly bodies seem close together.  Just our perspective.

Duchenne. 2020 has been disappointing, to say the least. The pandemic has interrupted clinical trial participation. At least three clinical trials known to me that had offered hope more than a year ago resulted in showing no efficacies and, therefore, have been shut down. Hope remains with gene slicing technology and recently a renewed interest in enzymes. Meanwhile, the 50 year standard of care of using steroids to mitigate inflammation and associated pain, with their own serious long term risks continues as the default treatment.

COVID-19 now has an end game, but the goal line still remains distant.

A conjunction of Saturn and Jupiter was fun to watch but is more of a mere perception seen from Earth than a close call between the two largest planets in our small galaxy.

 DMD researchers and stakeholders remain persistent in their quest to end Duchenne despite clinical trial set back after clinical set back while research proceeds at a glacial rate of speed.

Who knows, we may be closer than we think to ending the Duchenne dream killer. The uncertainty of outcome and the timing of helpful news causes us fatigue brought on by a germ in one instance and a missing protein in the other. 

 Ancient Jews certainly waited a long time for a savior. Faith and hope helped them endure. This Christmas, faith and hope can help us in the Duchenne community endure as well.

 Kindly,

Papa in Tennessee