Speaker was Angela Robb – her husband, Karl, was ill and unable to be with her. She and her husband are affiliated with PAN (Parkinson Action Network). Karl was diagnosed with Parkinson’s when he was 23 years old and joined PAN when it was formed in 1994 by a lady named Joan Samuelson. The PAN has a forum in D.C. every year which meets with members of Congress to talk about funding, etc., for Parkinson’s.
Angela and Karl are State Coordinators for PAN and have been volunteers for 15 years.
Everyone in the organization is a volunteer.
There is no registry in existence to show the number of Parkinson’s patients in the U.S.
This is something the group is pushing for. This program would enable the CDC to pull up information from a national data base – this information would be secure and very valuable in requesting funds from Congress for research, etc.
There is a program called NETPR which is the only funded program in the Army for Parkinson research. Located at Ft. Detrick, MD it does research as to how soldiers are affected by stress, neuro-toxins and other war-related conditions.
She mentioned several web sites to visit – NPF among them, and of course, PAN. Michael J. Fox Foundation also has a web site.
Angela talked about the FDA (which is seriously under-funded) and the NIH which is doing research on a very basic level. Nothing new from them. She said that the Social Security information they work with is 20 years old and needs updating. Medicare is looking at their program as to what they do and don’t pay for (the “donut hole) need to be reconsidered for Parkinson’s patients.
The VA has a research center in Richmond and their numbers have grown from 20,000 to 80,000 veterans who have Parkinson’s.
Angela distributed much information. One of them is a list of senators and congressmen which she urges us to use in writing to them expressing our wishes for more funding.