Next Foundation Webinar - Opioid Advocacy

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Location: Chicago

Re: Next Foundation Webinar - Opioid Advocacy

Postby ViewsAskew » Mon Apr 16, 2018 9:12 pm

badnights wrote:
THIS ^ alone is good reason that we all should be Foundation members at whatever level we can support. $5? Send it! $50? Yup. $500? All is appreciated and used wisely.
I shudder to think how little doctors and the general public would know if the Foundation wasn't doing its thing. What they do is absolutely essential for us patients.



Same here!
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.

Rustsmith
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Location: Pueblo, Colorado

Re: Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Tue May 22, 2018 9:04 pm

I signed up to participate in the Foundation's RLS Advocacy program. The folks at HMCW (Health and Medicine Counsel of Washington) in DC provided me with instructions about how to contact my various Congressional representatives's local offices to set up a meeting as well as documents that I could use during the meeting.

So far, I have met with the local health staff members for one of my senators and my representative. Both meetings went very well and were easy to do after reading HMCW guidance document. Each meeting went for about an hour and both staffers were very interested in learning about RLS. Both of them also seemed to be very knowledgeable about opioids in general, but were also understanding about how current regulations are making it increasingly difficult. During the discussions, I haven't been holding anything back when I explain that if things get worse and I lose access to methadone, then my options are very limited and very bad. They seem surprised when I said that one option is heroin, but once they think about it they understood the point. I also pointed out that suicide also becomes a very real option, which appears to underscore our dire situation. Both asked if suicides occur within the RLS community, which they do. Both said that they were going to immediately pass the info that I gave them to their legislative contacts in DC.

So, if you haven't signed up to participate in this program, please do ASAP. You do not need to be a member of the Foundation to do this. To find out how, go to https://www.rls.org/get-involved/advocacy
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.

Rustsmith
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Posts: 3061
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Wed May 23, 2018 11:39 pm

I got a followup email from the district director for my congressman this afternoon as a followup to our meeting on Monday. He had forwarded the Foundation information as well as his comments to their staff in DC. His email said that the DC staff had reached out to multiple Congressional committees working on opioid issues and they were all clueless about RLS and the issues that we face. Hopefully we can start shining a light on our problem and get some recognition in future legislation.

Therefore, if you haven't already signed up, please do so and then use the info they provide to start talking with the staff for your Congressional representative and both senators. It is easy and they are listening, but you have to speak out.
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
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Posts: 15133
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Next Foundation Webinar - Opioid Advocacy

Postby ViewsAskew » Sat May 26, 2018 4:53 am

Will so as soon as I get back home.
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.


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