HOW CAN WE IMPROVE THE ICE BUCKET CHALLENGE?

The other day when I was shopping for groceries at Bishop's Orchards in Guilford, Connecticut, I ran into the employees preparing for an Ice Bucket Challenge for ALS. I happened to have my camera in the car and ran to get it. I was just in time to capture the icy cold waterfall!  After everyone dried out a bit I walked over to the organizer and few of the employees who worked at Bishops and told them that I thought it was great that they were doing this to try and help people in need ......but then I had to add my concerns. I began by sharing the fact that many people who really have neurological Lyme disease are often misdiagnosed with ALS, M.S., Lupus, Parkinson's, Bipolar Depression, Chronic Fatigue Syndrome, Fibromyalgia, Rheumatoid arthritis....etc. I also asked them if they knew of any charity.....any charity at all.....that has ever found a cure.

 Finding a cure is supposed to be a disease charity's main objective....but so far we only have symptomatic treatments. Nobody could think of any charity that has found a cure for any disease. Many of these disease charities , such as the M.S Society, tends to ignore the studies and patients who try to share their misdiagnosis experiences with these charities. The charities continue to focus on symptomatic treatments....instead of cures and prevention....finding the cause. But...finding a cause does not make money so no one funds research into a cause or into prevention.

Instead, what is taking place is that cures and proper prevention are being suppressed while symptomatic treatments, offered by the drug companies, are the only solutions being given. These drugs never address the cause of the disease. In fact none of these diseases supposedly have any definitive tests, causes or cures. ...but are often thrown into the autoimmune category. After I shared my thoughts, the woman who organized the ice bucket challenge said to me that they were NOT donating to the ALS Foundation but were raising awareness and funds for Amanda's Angels.....a local charity. http://www.amandas-angels.org/about/  It was very encouraging to hear that they were helping someone local and knew that their time, money and effort would be well used. Amanda is a woman who found out she had ALS almost immediately after discovering she was pregnant. Now Amanda may or may not have the Lyme disease spirochete or other germ as the cause of her illness. She has been told that her case of ALS is genetic.

However.....what causes our genes to be aberrant and pass through the generations? Science is discovering that the food we eat and the microbes we come into contact with can change our genetics for better or for worse. So...just because we are told that something is genetic...doesn't mean we cannot improve or cure it if we have the proper information on how to do so. But as I mentioned before the drug companies and the charities do not want cures because this would cause them  both to be out of business. So...what is happening is that our society treats only the symptoms of disease, lets the real cause simmer under the surface and to progress to a more serious state.

My thought is......why don't we improve our fundraising efforts by still having fundraising events but donating the funds to either local people in need or to PRIVATE researchers who are NOT affiliated with drug companies or charities (which are probably just arms of the drug companies). We should have some sort of better communications between patients, activists, and researchers to determine what research is really needed and then fundraisers could be conducted accordingly. Unfortunately this takes more effort than just donating to any charity that has a good story or gimmick.

So...the next time you are asked to donate money to a charity...ask whomever is asking for the money...what specific research will be conducted with this money? Will it really be used for finding a cure or will it be used to keep us all sick while only treating the symptoms? Let's let the charities and the drug companies know how we feel! Perhaps if we stop donating to corporate charities and fund private researchers and local people in need......then things might improve.
Thank you Bishop's Orchard for helping out locally!