ALS Awareness Month

ALS AwarenessALS Awareness Month is a campaign to spread awareness of and to raise funds for research for a cure for ALS (amyotrophic lateral sclerosis).  In the United States, the campaign is observed every year in the month of May.   In Canada, June has been declared as ALS Awareness Month by the Canadian Minister of Health. 

Seventy-five years ago, baseball hall-of-famer, Lou Gehrig, gave an emotional farewell speech to the sport due to his battle with ALS. While he lost his battle shortly after, the fight to end ALS continues.  Great advancements are being made worldwide every day, not only through research, but by the people living with ALS, their families, and friends who are directly impacting the pace at which we move toward developing a treatment for people with ALS today.

What is ALS?

ALS, also known as Lou Gehrig’s disease, Charcot’s disease, and motor neuron disease (MND),  attacks certain cells in the brain and spinal cord needed to keep our muscles moving.  It is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. 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 death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.  Early signs and symptoms of ALS include:

  • muscle cramps and muscle twitching
  • weakness in hands, legs, feet or ankles
  • difficulty speaking or swallowing 

Diagnosis and Treatment

There is no single diagnostic test.  Instead, the disease is diagnosed by ruling out other muscle and nerve disorders using a variety of tests.  There is no single diagnostic tool for ALS. A series of clinical procedures are conducted to rule out neurological conditions whose symptoms closely resemble the disease. In the US, the diagnosis can take about 12 to 14 months. Researchers hope to expedite this process by developing tools that indicate whether people have the disease.

Most people live 2-5 years after their first signs of disease. About 10% of people survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop.

There is no cure or effective treatment; however scientists are working hard to develop therapies for this disease.  Currently, there is only a single medicine for specifically treating ALS – riluzole.  The drug, marketed by Sanofi-Aventis under the name Rilutek, extends survival only about 2 to 3 months.

This urgent unmet medical need for effective treatments for this devastating and fatal disease is the basis for the research and drug development effort at the nonprofit biotech organization, ALS Therapy Development Institute (ALS TDI).

How You Can Help

Become an advocate.   An ALS Association Advocate is someone who is passionate about getting involved with government at all levels to draw awareness and resources to the people affected by this disease. and willing step outside of their comfort zone to effect real change in the way our government responds to the needs of the ALS community.  Click here to find out more about how to become an advocate.

Raise funds.  There are fundraising events held throughout the year in the US and Canada to raise money for ALS research in both the US and Canada, including walks, runs, swims, golf tournaments and more.  There’s a great U.S. list to get you started on ALS – Be Aware website, as well as on the ALS Association U.S. and ALS Canada websites, and the ALS TDI website.  Many more can be found by searching the web.

Donate.  Donations to worthy nonprofits like ALS TDI and the ALS Associations help in a number of ways.  Your gifts help provide local services to people with ALS, global research to find a cure and advocacy efforts to raise awareness of this devastating disease.  Simply visit their websites for information on how to donate.

Sources: ALS Therapy Development Institute, ALS Association, ALS Canada

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