With the Ice Bucket Challenge and ALS hype flooding my social media feeds, I felt compelled to do my own research into the ALS Association, and the "fight" against ALS. This is a summary of my findings and is in no way intended to offend anyone - especially people whose lives have been personally impacted by ALS.
The following information is what will prevent me from accepting the Ice Bucket Challenge. As always I urge you to do your own research, and form your own opinions.
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Barbara Newhouse, President and CEO of
ALS Association, a “non-profit organization,” earns an annual salary of $297,288.00
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The date of the ALS Association’s inception
was 1985.
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The ALS Association has expended more
than $99 million since 1985 on treatment advances and cures. Despite spending
this large sum of money, prognosis for ALS has not changed since it was first
discovered in 1869.
·
The drug Riluzole was approved by the FDA
in 1995 for the treatment of ALS and continues to be the only FDA approved medication
for ALS treatment that exists.
·
There have only been four clinical trials
conducted on Riluzole. Two clinical trials showed that this medication prolongs
life by 2-3 months. The third and fourth clinical trials showed no benefit
whatsoever.
·
Life expectancy from initial diagnosis is
3-5 years. Most cases fall closer to the 3-year mark.
·
The most common adverse effects (occurring
in 20% of patients) of taking Riluzole are liver failure, weakness, nausea, and
decreased lung function.
·
The majority of ALS patients die from breathing complications
since this disease eventually effects the nerves that control the diaphragm, yet
these people are being prescribed a drug that can cause decreased lung
function.
·
“Leading the fight to treat and cure ALS”
is in the ALS Association’s mission statement. What association in the history
of the U.S. (or any other developed nation) has ever found the cure they have
been looking for? Not one. Treating
ALS makes pharma and other associations around $6 billion per year; the cure
would cause them to lose $6 billion each year, and would eliminate the ALS
Association and it’s affiliates. This is probably why only a very minute
portion of donations goes toward studying possible causes.
·
Genetic mutations account for nearly 50% of familial ALS cases in
Finland and more than a third of familial cases in other European populations.
Familial ALS accounts for 5-10 percent of all ALS cases (30,000 in the U.S). Only
2,100 people are said to have “inherited” the disease; the genetic mutation is
said to effect 1/3 of these cases. That means that approximately 700 people
have the “ALS gene” – what’s the cause for the other 29,300 cases? It doesn’t
make any sense to blame genes. This is what the ALS Association calls “major
scientific breakthroughs.”
·
The ALS Association says that they have
found the “ALS gene,” yet the human genetic code was made tens of thousands of
years ago when ALS did not even exist. Our genetic code has not changed in the
last 10,000 years, so how is there a gene for it? It’s similar to saying they
found the hangover gene.
·
A person can have the ALS gene (SOD1) yet
never develop ALS. This is because the gene has not been “turned on” or
expressed. The lifestyle you live determines which genes get expressed. This is
the study of epigenetics.
·
Trying to find the cure for ALS is like
trying to find the cure for obesity.
·
Although the ice bucket challenge has
worked wonders for the ALS Association, boosting their donations by tens of
millions of dollars, it will not change the prognosis of the patients suffering
from this terrible disease. It will, however, give Barbara Newhouse and some of
the other executives a nice bonus check at the end of the quarter.
·
The latest research being conducted is
looking at excitotoxicity as a possible causal mechanism of ALS. Excitotoxicity
is basically when the neurons in your brain get so excited that they die. A few
things that are known to cause excitotoxicity are high fructose corn syrup, MSG’s,
adjuvants contained in vaccinations, and aspartame, among many others.
·
Funding research that looks for the cause(s)
of ALS or the things that may trigger the genetic expression of ALS (in the
very few people that have the genetic mutation) would not only save lives but
would also save money. The road that the ALS Association is taking is very
similar to the Susan G. Komen Foundation. That organization’s CEO last year made
approximately $800,000.00. The SGK foundation has donated more than $2 billion
toward researching cures and treatments for breast cancer, yet the breast
cancer mortality rate has barely changed since 1998. We need to address the
CAUSE. The only charity, that I have found, that has dedicated itself to
finding the cause of breast cancer, in particular, is Breast Cancer UK (http://www.breastcanceruk.org.uk/).
They apparently recognize that finding treatments and cures is not working. We
need an organization like that in the United States for ALS, breast cancer, and
many other fatal diseases, but, we probably won’t see that for a very long time
– because that’s just not profitable.
My heart goes out to every ALS sufferer and their loved ones. It is a terrible, debilitating disease. I hope that the attention garnered by the Ice Bucket Challenge and the funds being raised are utilized in a way that eventually helps prevent ALS, rather than trying to find that "miracle pill."
References
ALS.org
Medscape.com
http://www.breastcanceruk.org.uk/
