The Regan Carter ALS Foundation

Making a Difference

My Father, Malcolm Carter died of ALS, Amyotrophic Lateral Sclerosis 17 years ago at the age of 62. Also referred to as Lou Gehrig's Disease, ALS is a progressive and fatal neuromuscular disease. My sister and I took care of him until the day he took his last breath.

It is indeed one of the most grim diseases to afflict human beings on the planet. Unlike cancer, heart disease and nearly all other diseases, there is no treatment, no remission, and no precedent for survival…it is unequivocally fatal. For those diagnosed with ALS, 92% of patients succumb to the disease within in 1-5 years. From the time my father was diagnosed in 1985, he survived exactly two years. In those two years we stood by and watched my Father valiantly battle the relentless onslaught of motor neuron death. His muscles wasted away and in the end he had lost eighty pounds, was completely paralyzed unable to walk, speak, swallow or breath.

I have been an avid skier and windsurfer for most of my life and always committed to being fit. But in the summer of 2002, I had the peculiar experience of not being able to get up water skiing after repeated tries. Something was amiss with my strength in my left arm. Shortly after that day, I began to notice persistent muscle twitching in my left arm and leg. I remembered how my dad's muscles used to twitch as he sank into the quick sand of ALS. These muscle twitches are referred to in medical lexicon as fasiculations and are invariably the sinister signal that motor neurons have begun their cascading cycle of mass suicide. I knew immediately that I was doomed. I would be the first case in my family of being diagnosed with the hereditary or genetic form of the disease called Familial ALS (FALS). Only 10% of cases have a family history. The other 90% are random and referred to as sporadic. For several months I kept my condition secret as I came to grips with not only my own fate but the potential demise of my sister and my children.

This tragic revelation has profound and almost incomprehensible implications for my family. My 10 yr old son, Max and 6 yr old daughter, Claire and my sister, Anne have a 50% chance of also contracting the disease in their lifetime. If my sister contracts the disease then her two kids will have a 50% chance and so on. Geneticists refer to this pattern as autosominal dominant and it can destroy the entire family tree within two generations. With this sobering reality in mind, I feel a deep responsibility to raise public awareness and fight this disease any way I can. So forgive me if I am somewhat evangelical in my campaigning for this cause. Like Michael J. Fox for Parkinson's or Christopher Reeve for Spinal Cord injury, I will pull every string, call in every favor, and use my influence to raise as much money as is humanly possible. But I need your help. You can start by Emailing this notice/website to three people outside the brokerage business who you can follow up with verbally sometime in the near future.

This is a battle, that for my family's sake and that of 30,000 other patients in the US, I do not intend to lose. At some point in the near future, I will be forming a committee to coordinate and organize various fundraising activities. If you or someone you know would like to get involved as a volunteer I would be very grateful. I will put together a golf tournament and a musical event in the next year but I will also be utilizing a somewhat more personal approach in my effort to fund research. I will be looking to you to introduce me to any high net worth individual or company that you think might allow me to make a formal face- to-face presentation for my cause. This is not about me. This is about making a difference in an disease that lies below the radar of pharmaceutical companies and is not a focus of the federal government. The patient population is too small....they simply die too fast to have a meaningful voice. It is interesting to note that

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