Just to let all know! Hubby Ralph and I attend the conference and it was really great! We met many people from all over the country. Some were Transplant recepients, others on Pd, others on traditional 3 times a week hemo, people on daily hemo, as well as a few like us on Nocturanl.
We had programs on how to tap into the Power of People Like US, Training and Educational Sessions on how to best advocate on issues affecting our health and lives of loved ones. There were experts on communications, governmental relations and patient advocay with strategies and tips on becoming persuasive and effective spokespeople, influencing public policy, how to communicate with elected and governmental officials and working with the media
Kim Carlos-President of KC Consulting shared her experiences and guidance on becoming an empowered and proactive patient/family advocate.
Kent Thiry-Chairman & Chief Exec Officer of DaVita -talked about the improtance of the current pending legislation before the US Congress (seeking to improve the quality of care for ESRD patients as well as the financial stability of Medicar’s ESRD program.
There was a training workshop on effective communicating with national and local legislators and media- this included role playng.
We were able to me with 2 Congressmen and one Congresswomen who are on the Congressional Kidney Caucus. They are with us on increasing awareness of kidney disease and to coordinate federal efforts to prevent and manage kidney disease.
Some of the Guest speakers we met at the Capitol Hill Reception were Vince Curatola (Sack) from “The Sopranos”
Keith Fahnhorst from the San Francisco 49’s
The next day we were pretty tied up with dialysis(since we could not bring our machine{SOMEDAY})
We did get to the NKF Clinical Meeting Exhibit Hall-this was truly amazing-there were many companies there (around 300) from Davita and others to Pharmacutical companies. The ASKYS machine was there but I really wanted to see the Nxstage but that was not there.
It was a great trip and very worth all the information that was provided.
I know do some lobbying in NY State on another issue so it will be easy for me to just move to the national level.
One thing I hope happens is that NKF will send us the e-mail addresses for all attendees by state so we can work on Congress by state.
I was asked to speak last friday night at a NKF annual dinner about our life and how we manage. When the meeting was over our local TV medical reporter asked if I would be willing to help do a piece(segment on nocturnal). Of course I said yes! So I guess I starting already!
Sorry this is so long but I really wanted to let you all know about the conference.
Bill Peckham- I met a man from Spokane Wa his name is Duane Sunwold, he will get in touch with you to work on things with the Northwest NKF.
I have also created a we site if you wish to look at it.
http://mysite.verizon.net/vze70trh
Pat