Each year the Parkinson’s & Brain Research Foundation provides a Financial Audit and endures a rigorous approval process for acceptance into US Federal Government fundraising campaigns. Through this process we have earned exclusive recognition with the award of the “Best In America Seal”. Below is the description of this honor as represented by the Independent Charities of America:
“The Independent Charities Seal of Excellence is awarded to the members of Independent Charities of America and Local Independent Charities of America that have, upon rigorous independent review, been able to certify, document, and demonstrate on an annual basis that they meet the highest standards of public accountability, program effectiveness, and cost effectiveness. These standards include those required by the US Government for inclusion in the Combined Federal Campaign, probably the most exclusive fund drive in the world. Of the 1,000,000 charities operating in the United States today, it is estimated that fewer than 50,000, or 5 percent, meet or exceed these standards, and, of those, fewer than 2,000 have been awarded this Seal.”
Remember: 98% of your donation goes to medical research.
Now that there is conclusive evidence of a link between Parkinson’s disease and a defective GBA gene, let’s take an in-depth look at the disease that is caused by defective GBA – Gaucher disease. We will look at the forms of the disease that affect the brain (mostly in children) and make an effort to explain Gaucher disease in its simplest terms – “A Layman’s Overview”. We will explain the disease in a logical progression, from the basic genetics (how a child gets the disease) through the potential outlook for a cure.
First The Genetics
Let’s begin by understanding that genes within the body provide certain functions necessary for good health. In other words, every gene has a job to do. Second, every gene in the body comes as a “pair”, meaning that there are two that provide the same function. Think of a pilot and a co-pilot who fly a plane. Collectively, they have a job to do – fly the plane. Every person’s body is composed of thousands of pilots and co-pilots (i.e. genes) each with their own instructions on where to fly the plane. Of the thousands of genes that we have, each of us has approximately 10 genes that have a co-pilot that does not know how to fly (defective). This is referred to as carrier status. It does not cause health problems because a person who is a carrier still has the pilot (the healthy side of the pair) who knows how to fly a plane and provides the necessary function for the body. In summation, everyone reading this newsletter is a carrier of some genetic defect because we all have approximately 10 co-pilots on various genes that do not know how to fly. Again, carriers carry the gene (defective co-pilot) for the disease, but do not have the disease because the pilot is healthy.
An abnormally large percentage of Parkinson’s patients are carriers (GBA gene).
Continue reading GBA – A Layman’s Overview
In March of 2010 the Wheatley family organized the first in a series of Annual Memorial Charity Poker Events. They share their insight and offer simple advice in the planning of a successful fundraising event.
RECRUIT THE HELP OF A FEW FRIENDS… colleagues, or close relatives. Don’t assume you have to go at it alone. A charity event is not intended to be stressful…but rather relaxing, fun, and memorable. If the organizing of the event becomes to burdensome or overwhelming, you are less likely to repeat it. With the help of a few friends, it really can be a great experience! Establish an event “leader.” If you are not the leader, pick someone.
Continue reading Fundraising Tips
Gaucher disease is an example of a “Mendelian” disorder, where defects in a single gene are the primary cause of the disease. Many common human diseases, such as hypertension, diabetes and arthrosclerosis, result from interactions between multiple genes and environmental factors such as diet, infections or exposure to toxins. In order to understand the changes in cellular mechanisms that result in these complex, or “multigenic’, diseases, researchers can gain information from rare, single gene disorders that share symptoms with more common, complex diseases.
Continue reading Is there a Parkinson’s – Gaucher Link?