This post is a
PSA of sorts, but addresses a disease that is close to my heart.
This weekend Trey, Vivi and I will be participating in the North Texas Chapter's Annual Walk to Defeat
ALS. This is the first time that I have participated in this event, but I have been wanting to become more involved with this organization for some time now. I think this is a great way to get the ball rolling! I have had first hand experience with
ALS, how it affects the body and how it impacts the lives of loved ones. In 1991, when I was six, my dad passed away from this horrible disease. Nearly 20 years later, there still is no cure for the disease, but there have been developments to help slow it down.
A little word from my Mom:
Thank you Erin for putting this information on your blog and for bringing
attention to this horrible disease. As you know, our family could not have
handled your dad's care without the support of the AlS Foundation and the help
we received from MDA as well. And did you know that your dad was insrumental in
funding and supporting the local ALSA Chapter when it was sinking. He had a lot
to do with keeping the ALS Foundation going in this area.
Friends-Family-anything you can do to help would be greatly appreciated and
would go to a wonderful organization easing the enormous difficulties families
dealing with ALS are facing. Thank You!
xoxox Mom
Not much is known about
ALS,
formally called
amyotrophic lateral sclerosis (
ALS), and often referred to as "Lou Gehrig's Disease."
ALS 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. 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. As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. The progressive degeneration of the motor neurons in ALS eventually lead to their death. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. {site}
A few bullet points from their website:
- Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
- Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.
- ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
- There can be significant costs for medical care, equipment and home health care giving later in the disease. (Nearly $200,000 a year!)
For more information about Lou Gehrig's Disease visit
http://www.alsa.org/.
The
ALS Association is a non-profit organization that fights the disease from every direction, including leading the way in
research, assisting people with
ALS and
families through chapters nation wide, and helping coordinate care. It is an organization that helps the improve the lives of those affected by
ALS while actively searching for treatments and a cure.
If you are interested in supporting our team, please visit
http://web.alsa.org/goto/vivisourvida to make a donation.
Thank you so much for your generosity!
