Letter to Congress

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My name is Aaron Winborn, and I am a 46 year old father of two young girls, ages 4 and 10, who lives in Harrisburg, PA. I am also an Open Source software developer, who was diagnosed three short years ago with Amyotrophic Lateral Schlerosis, ALS, more commonly known as Lou Gehrig's Disease.

Like the famous baseball player, I face the prospect of becoming locked-in, trapped in a body which is incapable of any movement. Already, my torso, arms, and hands are completely paralyzed, and I am incapable of speaking.

Unlike Lou Gehrig, I happen to live in an exciting time when technology has grown in leaps and bounds, offering me and other similar patients if not hope, as we are still no closer to a cure, then at least independence, from the power wheelchair that can be controlled by the patient's hands, feet, or even eyes, as the need arises, to a communication device, such as the Tobii I-15 that I am using to type this letter with my eyes alone.

This device, acquired mostly through Medicaid Assistance, has been virtually a life saver. It allows me to communicate with my family and friends directly, without the need for flashcards, which would have been my only option for communication a mere ten or fifteen years ago. It allows me to continue writing my blog, which is my portal to the world. It has even allowed me to continue work as a software developer. Most important, it allows me to communicate with my wife and my two young daughters as they try to deal with my ever-declining health.

As you read this letter, I urge you to please consider the future Americans, one every 90 minutes, who will be afflicted with this cursed disease. Imagine for a moment what it might be like to lose the ability to use your hands, your legs, and even your voice. Then imagine the indignity to have no access to a way to communicate with the world, or your loved ones, other than someone watching you blink as they point to a letter board. And yes, the human spirit is resiliant, and yes, people will make due in extraordinary circumstances, but I remind you that we are alive in the twenty-first century, and I ask you, who in this great country deserves to live with such indignities when the solution to their communication issues are at hand?

I will leave you with this thought: where medical science has failed the patient with ALS, technology has picked up the slack. Where medicine has failed to cure us, technology offers the cure.

Sincerely,
Aaron Winborn

Comments

Gerardo Bell's picture

I just read your letter. It

I just read your letter. It is a good one that focus a number of important issues. Actually many Americans are really suffering.

Real World Energy's picture

Reply to comment | Aaron Winborn

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The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.