Foundation Advocacy Day on Capital Hill

For everything and anything else not covered in the other WED/RLS sections.
Rustsmith
Moderator
Posts: 4081
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Foundation Advocacy Day on Capital Hill

Postby Rustsmith » Sat May 04, 2019 1:15 am

The Foundation sponsored meetings today on Capital Hill, which I participated in. I think that we all felt that it went very well. There were maybe 35 of us with RLS as well as the entire RLS Foundation staff, one of the doctors on the Foundation Medical Advisory Board and a number of people from the organization in DC that assists the Foundation's advocacy effort. We were split into four teams based upon where we live and each team visited the offices of about 5 senators and 5 representatives, including our own. This week was chosen because Congress is in the process of developing the budget for next year and we were asking for increased research funding at the NIH and DOD for more RLS/sleep research as well as funds for two new programs at CDC, one on doctor education and the other specific to developing as system for collecting data on sleep disorders. The staffers that we met with cannot give any commitments, but most indicated that their boss supported our requests. We also described the issues associated with the misuse of the CDC opioid guidelines (which they admitted to last week in the New England Jrnl of Medicine). They all indicated that they appreciate the problems that this has created for us, but also said that they do not expect for there to be any new opioid legislation until next year. There are plans to do this again next year, which will give us another chance to enforce our opioid message. All in all, it was a very productive day and all of the offices that I visited indicated they had no idea that so many people have RLS, but that now they have a much better understanding and will try to provide what support that they can.

Personally, I was excited to find out that Dr Jeffrey Durmer, one of the Foundation's medical advisors, is in the process of moving to Denver. He said that he has already been named as an Adjuct Professor at the UC medical school, which means that he will be working in the same group as my doctor. When Karla Dzienkowski made this announcement, she told him that one of his first assignments will be to convince the University to turn in their paperwork to become a QCC. When I had a chance after lunch, I explained to him the challenges that he will face in that regard.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 15736
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Foundation Advocacy Day on Capital Hill

Postby ViewsAskew » Tue May 07, 2019 11:16 pm

YAY!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
Posts: 2040
Joined: Mon May 21, 2012 3:27 pm

Re: Foundation Advocacy Day on Capital Hill

Postby debbluebird » Tue May 07, 2019 11:59 pm

Thank you Steve !

Rustsmith
Moderator
Posts: 4081
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Foundation Advocacy Day on Capital Hill

Postby Rustsmith » Wed May 08, 2019 2:05 am

It was a very interesting process. I heard someone say that it was a real life civics lesson.

On a humorous note, we were a bit early for a meeting at one of the Delaware senator's offices in the newest Senate office wing. So, our local guide pointed out this massive black sculpture in the atrium below. All of the offices have live TV with the news playing. It wasn't but a few minutes later that I looked up and saw a talking head on MSNBC with that same sculpture in the background. I doubt that they were doing a live shot, but it made things much more interesting.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 15736
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Foundation Advocacy Day on Capital Hill

Postby ViewsAskew » Thu May 09, 2019 6:37 am

Rustsmith wrote:It was a very interesting process. I heard someone say that it was a real life civics lesson.

On a humorous note, we were a bit early for a meeting at one of the Delaware senator's offices in the newest Senate office wing. So, our local guide pointed out this massive black sculpture in the atrium below. All of the offices have live TV with the news playing. It wasn't but a few minutes later that I looked up and saw a talking head on MSNBC with that same sculpture in the background. I doubt that they were doing a live shot, but it made things much more interesting.


:D
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 1 guest