Each year I put out requests for donations for the National Parkinson’s Foundation of Western New York and each year the majority of you have responded generously. I know there are many worthy charities that make requests of you this time of year. Perhaps you have connections with one or another of them. We understand that, like us, you have limited funds. What makes this charity any different? The statistics show that every one of you has a relative or know someone that has Parkinson’s disease, a friend, a co-worker, a relative, a classmate - me. Last February, I decided, with the input from my doctors to have two sets of electrodes installed in my brain. Deep Brain Stimulation (DBS) is a surgical therapy for Parkinson’s disease (PD) whereby four electrical contacts are implanted in specific areas of the brain. Leads are then attached by an extension wire to a battery operated neurostimulator. The DBS leads deliver a constant stream of current to the brain to block abnormal nerve signals which can lessen tremor, rigidity, slowed movement and dyskinesia (a side effect of PD medication). For some, it can improve walking. While DBS is a treatment for PD; it does not cure PD nor does it stop the progression of PD.
As many as one million Americans currently live with Parkinson's disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease.
Famous people who have announced that they have or had PD include: Michael J. Fox, Muhammad Ali, James "Scotty" Doohan (Star Trek), Jim "Mr. Magoo" Backus (Gilligan’s Island), Mao Zedong (Communist Leader in China), Govenor George Wallace (D-Alabama), Vincent Price (Actor), Pope Saint John Paul II, Janet Reno, Michael Richard "Rich" Clifford (US Astronaut- 1st PWP in Space), Linda Ronstadt, Johnny Cash, Estelle Getty (Golden Girls), Billy Graham (TV Evangelist), Charles Schultz (Creator of Peanuts comic strip), Bob Hoskins (Who Framed Roger Rabbit, Hook, etc.))
The average age of someone being diagnosed with Parkinson’s is 60 years old. My generation is due to hit that sweet spot in the next few years. Think about this, your friends and classmates are going to be in that next set of statistics. Those of us that have already been diagnosed are the canaries in the coal mine. The time between the observation of symptoms and diagnosis can be 10 to 20 years. I lost my sense of smell, a common first symptom at age 25. That was 29 years ago. We cannot tell that for certain because, to-date there is no definitive test for Parkinson’s disease. Figure into this that it takes 15 to 20 years for the FDA to approve a new medication, we are looking at age 85 before a cure could be available for distribution. This is why there is a push to develop a cure now. We do what we can to raise awareness and raise funds to ensure that the money for the testing and trials keeps pushing forward. There is so much we just don’t know about this disease.
I am not asking for a hundreds of dollars. Consider contributing $20.00 to $50.00 as annual pledge. A large group contributing $20 to $50 annually will quickly outpace a large donor giving $500 given once. Don’t worry about forgetting, I’ll be happy to send reminders. You can also donate by credit card through the donation site www.movingdaybuffalo.org you can donate to a specific walker (David Wolf), a team (Wolfpack – Buffalo), or our Chapter (NPFWNY).
Charity Navigator (http://www.charitynavigator.org/ ) a national non-profit charity rating service rated the National Parkinson Foundation with a score of 75.2% (Percent of the charity’s budget spent on the programs and services it delivers).
Thanks for your attention and consideration. You can keep up with our efforts and activities at www.npfwny.org
when the void of total darkness
is pierced by but one single ray of light