Between Memorial Day and July 4th, we’ll be doing a series of posts on Authentic Patriotism, featuring vignettes from Stephen P. Kiernan’s book Authentic Patriotism as well as local stories of authentic patriotism (you can submit them HERE). Stephen will be our featured speaker at the June 21 Dinner at the Square (find details HERE).
One of the first concepts offered by Stephen Kiernan in Authentic Patriotism is that authentic patriots sometimes get there kicking and screaming.
Kiernan tells us the story of a thirty-five year old Jenifer Estess diagnosed with the unforgiving amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease. Turns out Lou Gehrig’s is considered an “orphan” disease, one that is not sufficiently profitable – usually because of relatively low numbers of people suffering from the illness – for private companies to take on the expensive research to find a cure. Consistent with Kiernan’s message, government research was also woefully inadequate to date.
Jenifer and her sisters Valerie and Meredith knew that there was a problem and something had to be done. They didn’t have the luxury of the normal time-consuming path of medical research, so they gathered the most important names in motor neuron research, formed an advisory board and cut checks immediately for ideas with promise. These women, total amateurs who hadn’t given this a thought mere months prior, revolutionized research into ALS through creation of Project ALS, which quickly addressed any impediment in the flow of research needs.
To date, Project ALS has raised nearly $40 million to fund collaborative research into this devastating disease. Valerie and Meredith Estess consider it their duty to continue, despite the loss of Jenifer to ALS in 2003. Says Valerie: ” I love my country. And this is the only place on the planet where, if you’re willing to work hard for what you want, you might be able to get it. And us? Well, we are getting closer… you have to do something yourself.”