Wednesday, August 20, 2014

The ALS Non...Challenge

So... since I have no desire to dump ice or water over my head, I thought I would spend some time educating myself and sharing my new knowledge on this disease with you. As far as advocacy and awareness goes, many of the videos contain little or no information about the disease, why the money is so desperately needed or what it’s used for.

1. What is ALS?

Image for Hashtag NOICEBUCKETCHALLENGE #noicebucketchallenge Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles (muscle action we are able to control, such as those in the arms, legs and face).

2. What are the symptoms of ALS?

Symptoms include increased muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.

3. Who gets the disease, ALS?

Only 10% of people with the disease get it from genetics/family history. A whopping 90% of cases have no known cause for ALS.  Besides tests to rule out other diseases, there is no test that can provide a definite diagnosis of ALS, although the presence of upper and lower motor neuron signs in a single limb is strongly suggestive.

4. Is there a treatment for ALS? 

Riluzole is the only treatment that has been found to improve survival but only helps to lengthen survival by a matter of months. Riluzole does not reverse the damage already done to motor neurons.

5. What is the ALS Association going to do with the donations?

They stated that the funds raised are going to help people with ALS and their families and caregivers in the battle against the disease, while resolutely pursuing all avenues to extend, improve and ultimately save lives.
  • Funding groundbreaking research in laboratories across the globe. We presently support 98 active projects and recently announced $3.5 million in funding for 21 new projects led by the world’s top scientists. The ALS Association has championed some of the most significant discoveries to date.
  • Providing vital support and care services through our nationwide network of chapters to people with ALS and their families in the form of support groups, medical equipment, respite grants and more, all while ensuring the highest standards of multi-disciplinary care through our Certified Treatment Centers of Excellence.
  • Empowering ALS advocates to encourage their elected officials to support and advance issues important to the ALS community; and convening the largest gathering of people with ALS every year in Washington, D.C. to raise awareness of the disease and support government programs designed to help find a treatment and cure for ALS.

In addition to this research, I have also made a monetary donation to The ALS Association

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