Yesterday, I met and spoke to several people from the Parkinsons Action Network. You can see their website at parkinsonsaction.org. ( or just google Parkinsons Action Network)
They work to bring all the Parkinsons network organizations together before congress to pass legislation for funding for Parkinsons research, medical benefits etc.
At one time they had looked into trying to compile a list of people with Parkinsons to document just how many people are suffering with the physical and financial burdens of PD.
It seems that there is so much legal red tape due to privacy issues that the only way to accomplish this is to set up a voluntary registry on line where PWP can stand up and be counted.
Congress needs to be aware just how many voters are impacted by Parkinsons and the general public needs to be educated on how prevalent and widespread Parkinsons has become.
If a site is developed where you can list your name and the year of your diagnosis, would you be willing to participate?
I would really like your thoughts on this.
If they also had a separate registry that listed people who have died WITH Parkinsons would you be willing to post the name and approximate diagnosis year in memory of a relative or friend you know who has passed ?