Senator James Risch
Senator Mike Crapo
Congressman Raul Labrador
Congressman Mike Simpson
I am writing in support of the 2016 Parkinson’s Day of Action. Today our Idaho delegation will be meeting with you and your team to ask for your support of issues critical to the Parkinson’s community. I regret that I am not there in person this year. It’s ironic that over the years in our meetings I have used the example of the long-term battle with Parkinson’s disease compared to the shorter battle with cancer. It’s ironic because just a few months after losing my Dad to Parkinson’s, my husband is now in the fight for his life with a rare and aggressive form of cancer. With a front row seat to the ravages of both diseases, I can assure you they are both terrible. The physical, emotional and financial toll these diseases take on your constituents and their families is catastrophic.
What is even worse is the fact that we, the world leader in so many things, still lack basic knowledge of Parkinson’s disease. Who’s gets it? Where? What do they have in common? How can we begin to properly allocate the limited funding resources we have if we don’t know where it will be most effective? To that end, I implore you to please support the following:
·Advancing Research for Neurological Diseases Act (S.849/H.R. 292), which would create a national data registry for Parkinson’s and other neurological diseases at the Centers for Disease Control.
· Promoting telemedicine and supporting other access to care initiatives that have immediate impact on the ability of people with Parkinson’s to receive the best treatment possible and ensure a better quality of life. This is absolutely critical in our great state of Idaho, where we don’t have a single Movement Disorder Specialist and your constituents must travel out of state to receive this level of Parkinson’s care, if they receive care for the disease at all.
· Continuing to strengthen funding for medical research that will lead to better options for managing Parkinson’s, more effective treatments, and eventually a cure.
As always, I invite you and your team to contact me directly with any questions you may have. You may also contact the staff at the Parkinson’s Action Network for specific bill information.
Idaho State Director, Parkinson’s Action Network