“Every battle is won before it is fought. It is in choosing the terrain in which the battle is fought.” Sun Tzu
It seems that the current terrain has not produced the best results desired and a shift needs to occur….
Perhaps a change in the focus of the search will get us closer to the elusive cure. I’ll be the first to give proper credit to some very determined basic science researchers across the country and around the globe that are committed to getting a cure found. I will also submit that I am not a scientist by training and my views and opinions are my own based on visiting with, asking about, expecting more, and establishing connections with researchers in all areas of the country. What we need to realize as a patient community, and many already do, is that compounds that go through the research process (from basic to clinical) will not lead us to a cure. Slowing the progression is what is most promising now, but slowly but surely, there is no stopping this vicious disease. I’ll never squelch the fire that the excitement brings to what is coming down the drug pipeline because what has worked for me may not be the best course of treatment for many others. Furthermore, it is as a direct result of people with Parkinson’s volunteering for clinical trials that makes this possible.
In my opinion, basic science research is the key to finding a cause and a cure and the change in focus for research needs to go from the “shotgun blast” mentality and move into what I will term a “reverse cohort model” of searching for clues that cause Parkinson’s. Historically, the “shotgun blast” effort has come about by putting all possible disease causes in the open and trying to figure out what they have in common. Is it farming, fertilizer, water, etc.? There are two things that have caught my attention through the years of involvement in the advocacy arena. One is that this disease knows no bounds. We are not protected by race, ethnicity, religion, gender, socio-economic status, occupation, and even age. Two, the number of genes that are known to cause Parkinson’s Disease are now in the 20’s and counting. This is where my thoughts on researching the “reverse cohort model” come into play. Let’s say we, as the patient and volunteer community focus on finding those whom have tested positive for a gene that causes P.D. The cohort undergoes extensive background research as to family history of neurological diseases, where they’ve lived, what they’ve done for a living, etc. Perhaps, just perhaps, this would give us a clearer picture as to what Dr. Bill Langston has said that “genetics loads the gun and the environment pulls the trigger”. Studies have been done on twins with P.D. and multiple family members with P.D. This technically falls under the “shotgune blast model” because the undelying cause, unless designated by genetic factors, still has not been identified.
The “reverse cohort model” of research would not be an easy task because of the issue with genetic testing and the implications that it has on a person’s quality of life moving forward, but it is something to consider if we are to find the links that cause Parkinson’s Disease to rear its ugly head and be able to alleviate the suffering of so many living with this insidious disease.