Vacation

Just returned from our annual family vacation to a popular beach location. The facility and condo unit basically made our stay weather proof. A wonderful time, especially with three grandchildren, including our Duchenne grandson Hayes who learned how to play Scrabble with the adults. He is so smart.

This annual vacation is well planned and typically includes features to be enjoyed by each of our family members. This year, it was a constantly streaming lazy river stream of water inside the complex for tubing to avoid the heat and uncertain weather of the beach. Quite the enjoyable fall-back activity.

Vacation is fun for families looking for a break in routine, especially post-COVID. However, researchers and financial supporters of that research supposedly motivated to find a cure to Duchenne should not be allowed any vacation from the effort.

A national news outlet reported last evening that one of the world’s premier biopharmaceutical companies headquartered in New York City, just as an example, spends more dollars on advertising than on research in certain clinical and pharmaceutical endeavors. Sounds like a paid vacation to me, as a personal opinion that is not limited to any particular big Pharma concern.

Come on researchers and related funders. Get beyond gaudy ROI and unnecessarily extended trial periods pushing for mitigating drugs and exotic genetic manipulation and get to the heart of the dreadful disease so it no longer lays a path for a death sentence for thousands of young boys each year.

Proift is important in our economy but freeing boys from the dream killer of Duchenne should be considered much more important and imperative. Be a hero in terms of modality results even if some profit is sacrificed in the process.

Please, do not take a vacation until we learn to end Duchenne.

Kindly yours,

Papa in Franklin