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Duchenne – Fire and Ice

Duchenne – Fire And Ice

Fire and Ice

American writer Robert Frost is well known for his powerful poem, “Fire and Ice”. With his literary magic, Frost addressed how strong emotions, left unchecked, can lead to human destruction while an icy attitude can cause apathy and a lack of caring for others.

Duchenne – what a terrible muscle degenerative disease for young boys (and some girls). A real dream destroyer. My adorable and smart four-year-old grandson has Duchenne. How do we fight it?


September is Duchenne Activity Month. Members of the Duchenne community have been sponsoring walkathons, runs, cook-offs, and other fun activities to facilitate financial collections by some of the most ingenious means (such as firemen asking folks to “fill the boot”). Personally, I have been writing blog posts which can be found at www.rallyforhayes.com and www.duchenneawareness.org.

Whatever we do to raise awareness about Duchenne, it is important that we maintain steadfast efforts ALL YEAR LONG, well beyond the month of September. Stoke the fire, and let’s re-direct our fears, anger and, yes, even hate, towards the Duchenne monster into a positive and worthwhile energy that palpably supports Duchenne stakeholders in a way that finally tips the scale from merely symptomatic treatments and no cure to very efficacious treatments and a cure on the short horizon.


As for ice, let’s not become apathetic or deferential to others believing someone else will work this horrific problem. You and I have a role to play.

For the remainder of this month of September, I challenge each of us in the Duchenne community to carefully re-evaluate our respective roles in connection with the fight against Duchenne, lay out an action plan, then stick with that plan until next September. At that point, we can regroup depending on whatever developments may arise in the interim.

Duchenne destroys dreams.