The amyotrophic lateral sclerosis (ALS) is a rare disease.
So rare that only 5 out of 100,000 people worldwide can be affected by it.
There are no known risk factors; only that 1 out of 10 cases of ALS is due to a genetic defect. There is also no known cure; the medicine Riluzole (Rilutek) can only prolong survival by several months.
Riluzole can reduce the damage to motor neurons brought by the disease by decreasing the release of glutamate. Glutamate is the “major excitatory transmitter in the brain.” It is one of the 20 amino acids that make up proteins and regulates the brain. It is otherwise known as monosodium glutamate (MSG), a flavor enhancer in food.
But Riluzole could damage the liver. This first disease-specific therapy could only offer hope that ALS can be slowed down by new medications or combination of drugs someday.
Pete Frates, the 29-year-old former captain of the Boston College Baseball Team who was stricken with ALS two years ago, would just use an online virtual keyboard to type. He was the one who started the ALS Ice Bucket Challenge that dares anyone to endure a bucketful of icy water over their heads or donate $100 to the ALS Association.
To date, Frates would use a ventilator to be able to breathe on his own. He would eat through a feeding tube to be able to swallow. He would “fight harder and harder” to be a husband and father to his wife Julie, who will be giving birth on September 10.
“[I] challenged President Obama to give the ALS community a stronger voice in Washington; the CEOs of Fortune 500 companies to donate $2 million for ALS research, and Bud Selig [Commissioner of Major League Baseball] to make July 4 a day to honor Lou Gehrig. You each have 24 hours to dump a bucket of ice on your head.” ~Pete Frates after he performed the Ice Bucket Challenge at the Fenway Park
Update: Last March 11, Dr. Richard Bedlack of the Duke University was able to come up with four alternative therapies to beat ALS: coconut oil ingestion, fecal transplant, cannabis consumption, and vitamin D intake. (March 16, 2015)
Video taken from the YouTube Channel of Rick Laufer