Next Foundation Webinar - Opioid Advocacy

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Rustsmith
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Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Fri Nov 17, 2017 5:53 pm

The next Foundation webinar will be held on December 5 at 3PM Eastern time. The topic will be "Advocacy and Policy Implications from the Opioid Crisis". Participation in the live webinar is available to everyone (i.e. only webinar recordings are restricted to Foundation members). To register, go to https://register.gotowebinar.com/register/4459713007172363521
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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Opioid and RLS Advocacy

Postby Rustsmith » Tue Dec 19, 2017 7:14 pm

If you are a Foundation member and haven't had a chance to listen to the webinar, I encourage you to do so.

During the webinar, they discussed an initiative that is being taken by a group in Washington, DC on behalf of the Foundation. The group does advocacy work before Congress for "rare" medical conditions and agreed to work on RLS since so few people know about RLS. If you want to participate, all you need to do is send an email to Peter Herzog at herzog@hmcw.org. In the email, he will need your mailing address so that they can use it to determine your Congressional representation and later to use as evidence that you live in your representative's district.

I signed up to participate. Peter sent me a draft of a letter that he will send to my congressman. All I had to do was add a paragraph explaining the impact that the government's opioid policies are having on me. I emailed it back to him. They will handle everything else.

So, for those of you who live in the US and would like to changes not only in opioid policies but also government funding of RLS research, I strongly encourage you to contact Peter.

I should add that they particularly want to hear from you if you live in California, Florida, Indiana, Kentucky, Louisiana, North Carolina, Oklahoma, Oregon, Tennessee, Vermont, Washington or West Virginia since Congressman from these states sit on key committees.
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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Re: Opioid and RLS Advocacy

Postby ViewsAskew » Tue Dec 19, 2017 9:16 pm

Rustsmith wrote:If you are a Foundation member and haven't had a chance to listen to the webinar, I encourage you to do so.

During the webinar, they discussed an initiative that is being taken by a group in Washington, DC on behalf of the Foundation. The group does advocacy work before Congress for "rare" medical conditions and agreed to work on RLS since so few people know about RLS. If you want to participate, all you need to do is send an email to Peter Herzog at herzog@hmcw.org. In the email, he will need your mailing address so that they can use it to determine your Congressional representation and later to use as evidence that you live in your representative's district.

I signed up to participate. Peter sent me a draft of a letter that he will send to my congressman. All I had to do was add a paragraph explaining the impact that the government's opioid policies are having on me. I emailed it back to him. They will handle everything else.

So, for those of you who live in the US and would like to changes not only in opioid policies but also government funding of RLS research, I strongly encourage you to contact Peter.


Excellent! Will contact him right now.
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
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Re: Next Foundation Webinar - Opioid Advocacy

Postby debbluebird » Sat Feb 10, 2018 9:23 pm

I sent my story to the board. They created a letter. Here it is.
February 5, 2017
Dear Representative,
I am a member of the Restless Legs Syndrome Foundation. We are a nonprofit §501(c)(3) organization dedicated to
improving the lives of men, women, and children living with this often-devastating neurological condition. The
Foundation works to increase awareness, improve treatments, and support research to find a cure.
As a constituent, I am writing on behalf of the millions of US citizens affected by Restless Legs Syndrome (RLS) to
give you background information on this devastating condition and to ask for your support for important medical
research and patient access priorities affecting victims of RLS and their families. RLS causes very uncomfortable
sensations in the legs, accompanied by an uncontrollable urge to move them. RLS is a neurological sensory-motor
disorder with symptoms that are produced deep within the brain. Millions of Americans are affected by RLS. It
disrupts sleep, which robs victims of the ability to work and live normally. It can be agonizing. Equally important,
the profound sleep loss may put RLS victims at risk for developing heart attacks, strokes, and even Alzheimer’s
disease. It is a life-long disease. There is no cure, and treatments are imperfect.
I take Methadone, 5 mg, times two tabs during the night, sometimes three if my legs are bad. I would be dead if I
couldn't get this medication. I have tried at least 20 other meds. Nothing else works. The side affects on the other
meds are just too awful. I have been taking it for 6 years.
Current treatment recommendations for RLS include several medications that do not provide life-long relief. Indeed,
for many patients, after months or a few years of relief, some prescribed medications actually worsen the disease, a
phenomenon called “augmentation.” When that occurs, low daily doses of opioid medications such as methadone are
often the only effective treatment. Clinical studies have shown that addiction and dependence are not common
complications for affected individuals, since the total daily dose of opioids used to manage RLS is quite low.
RLS is NOT a chronic pain condition; opioids are used to treat the underlying neuropathology issues, not a sensation
of pain. If patients ever lose access to opioid therapies, they will also lose the ability to manage their RLS, resulting
in severe loss of sleep, continuous misery, and worse.
As you work with your colleagues to finalize legislative and appropriations items for the current session of Congress,
we hope you will actively support the following RLS community priorities:
• Please enact the $2 billion funding increase for the (NIH) that is pending for FY 2018 to make more funds
available for much-needed research to identify better treatments and a cure.
• Please finalize FY 2018 appropriations for the Department of Defense so that “sleep disorders” continue to be
included on the annual list of conditions deemed eligible for study through the Department of Defense Peer-
Reviewed Medical Research Program. RLS is a major sleep disorder that affects an estimated 40,000 active duty
military personnel.
• As you consider various legislative proposals and work with federal agencies to address the opioid epidemic,
please consider the needs of patients who rely on regular use of opioids to manage RLS. Please support a
diagnosis-appropriate safe harbor for RLS patients so they do not face arbitrary barriers RLS victims need for
their physicians to prescribe opioids as needed without undue restriction.
Sincerely,
Deb

badnights
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Re: Next Foundation Webinar - Opioid Advocacy

Postby badnights » Sat Feb 10, 2018 9:47 pm

I like it.
Deb wrote:RLS is NOT a chronic pain condition; opioids are used to treat the underlying neuropathology issues, not a sensation of pain.
Deb wrote:Please support a diagnosis-appropriate safe harbor for RLS patients so they do not face arbitrary barriers...
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Next Foundation Webinar - Opioid Advocacy

Postby ViewsAskew » Sat Feb 17, 2018 6:51 pm

So impressed with your initiative and their response!
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.

Polar Bear
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Polar Bear » Sat Feb 17, 2018 10:51 pm

:thumbup: Me too
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Yankiwi
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Yankiwi » Thu Feb 22, 2018 5:15 am

RLS is a neurological sensory-motor disorder with symptoms that are produced deep within the brain.

Deb, I’ve memorised this sentence, it’s such a clear definition. Your story is excellent. I had my sister read it, and even though she has a mild case, she called My RLS “mental” after I told her it was neurological and she’s been trying to “cure” me during this entire holiday (have you tried this, have you tried that, etc.) very annoying.

Polar Bear
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Polar Bear » Thu Feb 22, 2018 1:04 pm

Yankiwi, your post rings such a bell for me. People want to help. I have a friend who constantly offers advice gained often from weekly magazine type articles, the main piece of advice being to try tonic water. She tells me this at least once a month. Also to relax with white noise. I have to admit that I get frustrated with her regular advices - but she does so with a kind heart.

RLS is a neurological sensory-motor disorder with symptoms that are produced deep within the brain.

I will remember this.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

yawny
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Re: Next Foundation Webinar - Opioid Advocacy

Postby yawny » Thu Feb 22, 2018 8:34 pm

And those who think they’ve experienced RLS just like you do...my 80 year old step father can sleep anywhere and at anytime like falling asleep in a metal outdoor patio chair at a Starbucks while cars and people go by and family members get drinks. He told me recently that he had horrible sleep like me because he woke from a kick that really startled him. One freakin kick. But truly I thought it was really sweet that he was trying to understand what I experience. People just have no idea. I’m glad for them but just no freakin idea.

badnights
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Re: Next Foundation Webinar - Opioid Advocacy

Postby badnights » Sat Feb 24, 2018 7:18 am

I’m glad for them but just no freakin idea.
:D
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Tue Mar 06, 2018 6:32 pm

If you haven't seen it through some other channel, this link provides a summary of the Foundation's trip to Washington, D.C. to advocate for us. It includes a mention of delivering the letters that many of us wrote.

https://rlsfoundation.blogspot.com/2018/03/rls-foundation-in-washington-dc.html
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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Re: Next Foundation Webinar - Opioid Advocacy

Postby ViewsAskew » Tue Mar 06, 2018 7:43 pm

Rustsmith wrote:If you haven't seen it through some other channel, this link provides a summary of the Foundation's trip to Washington, D.C. to advocate for us. It includes a mention of delivering the letters that many of us wrote.

https://rlsfoundation.blogspot.com/2018/03/rls-foundation-in-washington-dc.html


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.
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.

badnights
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Re: Next Foundation Webinar - Opioid Advocacy

Postby badnights » Fri Mar 23, 2018 5:36 am

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.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Mon Apr 16, 2018 12:33 am

If you do not follow their announcements or see Nightwalkers, the next webinar on Opioid Advocacy is being held tomorrow (Monday). It isn't too late to sign up if you haven't already. 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.


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