 |
 |
1. Rep. Vince Snowbarger, meeting w/ 2. Rep. Jim Ryun ----------------- Last Monday we had a fine meeting with Rep. Vince Snowbarger of Kansas in his Kansas City, KS district office. We had requested a meeting some time ago and were quite surprised and pleased when his aide finally contacted us with an appointment time. Present were myself, my husband Fred, Mary Rack, Dean (c.giver & Ins. agt.) & Maryem (PWP) Floyd, Earl Burum (PWP, immed. past pres. of the Parkinson Assoc. of Grtr KC), and David Huff (a state leg. & new bd. member of of PAGKC). These folks were rounded up by our very competent NPF coordinator, Deb. And of course the Congressman and a Washington aide named Kevin. The meeting went very well in terms of his asking and we giving info. He is very bright and a good facilitator. He informed us that a grandparent had suffered with PD and his mother has been dx w/ Alzheimer. None the less, he wanted a better understanding of the disease which he felt he knew very little about. We shared with him our own histories as well as some other examples, and Earl left some NPF booklets. We discussed the economics emphasizing the current and potential drain on on government resources. He said he is going to visit Fred Upton re: the bill. We gave him some fact sheets on the Udall bill, the Kansas Proclamation, and a copy of J Samuelson's testimony. Mary showed him a picture of her mother three years ago and then one of "her better pictures" today--very striking. He expressed wariness over the politics of disease. He gave a good listen but he still needs to be convinced. Each person or couple is following up w/ thank you note. We will f.u. with him and his aides. A special thanks to Margaret Tuchman who provided a profile of his legislative history (he's a 1st term rep.) ------------------------ A constituent of Jim Ryun understood over the phone that this Kansas Congressman supported the Udall 1260 bill. But in a subsequent letter, he gave certain criteria that the bill should meet before he could earmark this funding. PAN & Jim Cordy have provided some specific facts to share with Rep. Ryun. Is anyone else in his district contacting him? If so, we have info to share w/you. -------------------------- :-) Barbara Blake-Krebs [log in to unmask]