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ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. “A” means no. “Myo” refers to muscle, and “Trophic” means nourishment – “No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.

Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. The motor nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle control. Examples of voluntary movements are making the effort to reach for a smart phone or step off a curb. These actions are controlled by the muscles in the arms and legs.

http://www.alsa.org/about-als/what-is-als.html

FACTS:

  • Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, this disease is variable, and many people can live with the disease for five years and more. More than half of all people with ALS live more than three years after diagnosis.
  • Once ALS starts, it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow, and breathe and shortening the life span. How fast and in what order this occurs is very different from person to person. While the average survival time is 3 years, about twenty percent of people with ALS live five years, 10 percent will survive ten years and five percent will live 20 years or more.
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Every 90 minutes someone is diagnosed with ALS and someone else dies from it.
#Every90Minutes

Click here to see a short inspirational video about the effects of ALS on a family and their journey to overcome it.

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LATEST NEWS:
 
The FDA has approved the 1st new drug for ALS in 22 years – Radicava. The drug will be available in August 2017.

What will Radicava do for people with ALS? How meaningful of a treatment is it?
Although Radicava is not a cure, it may be an important advance in helping people live with the disease. Because people with ALS experience varying rates of progression, slowing the decline of that loss of function is important. Depending on a person’s level of function when they begin treatment, the impact Radicava demonstrated in clinical trials could translate into potentially helping people preserve function longer.

What is the recommended dose of Radicava?
Radicava is administered via intravenous infusion. Radicava is administered in 28-day cycles by IV. It takes 60 minutes to receive each 60 mg dose.

For the initial cycle, the treatment is infused for 14 consecutive days, followed by a two-week drug-free period. All cycles thereafter are infused for 10 days within a 14-day period, followed by a two-week drug-free period.  This cycle continues for life.

How much will Radicava cost me?
The drug’s list price is $1K per infusion, $11K per dosage cycle, which amounts to $146K per year. This does not take into account coverage from insurance or Medicare/Medicaid, which is currently being decided.

http://www.alsa.org/research/radicava/