Restless Legs Syndrome Foundation Blog

"Congressional Sign On Letter" for Research and Awareness for Sleep Disorders

Background

Congressman Adam Schiff, a champion for the sleep community, is leading an official Congressional Sign On Letter asking the Appropriations Committee to prioritize support and resources for additional sleep and sleep disorders research and public health awareness. To be effective, we need your member of the U.S. House of Representatives to “sign on” to this letter.

Urgent Deadline Approaching

Your Congress Person will only join if YOU (the constituent) ask, and the final deadline is March 6. Take action TODAY, it is imperative! Here’s how:

1. Provide us with your name, address and email here. Include your Representative's name - go to www.house.gov and enter your zip code in "Lookup" to confirm your current member of House of Representatives.
2. Within 24 hours we will return text that you can copy and paste into an email (sample below) along with the email address for the staffer that handles healthcare for your district.
3. Insert staffer's email, cc: amber@rls.org and Press SEND!

Thank you for joining our RLS advocacy efforts by raising your voice for RLS, sleep and sleep disorders!

-----*SAMPLE PERSONALIZED REQUEST EMAIL*-----

To: [first.last]@mail.house.gov
Cc: amber@rls.org
Subject: Sign On Letter – Sleep Community

Dear [Staffer],

My name is [Your Name] and I am a constituent from [City, State]. I am also an advocate for the RLS and sleep disorders patient community. I hope your office will join the attached sign on letter, which supports the community’s appropriations recommendations for FY 2021. To join this letter, please contact Anthony Theissen in the office of Congressman Schiff at Anthony.Theissen@mail.house.gov or x5-4176.

Thank you for your time and for considering this request.

Sincerely,
[Your Name]
[Your Address]
[City, State Zip]

ATTACHMENT: FY21 Sleep Disorders DC & Sign on Letter

Act NOW! Send us your request by March 5!

Please submit your information now, you will receive a personalized email to send to the appropriate health staffer within 24 hours. All emails must be sent before March 6, 2020.

By Carla Rahn Phillips, Chair of the RLS Foundation Board of Directors

For those of us with RLS – and that includes me – it’s easy to think we already have enough challenges without taking on something outside of our personal concerns. Nonetheless, many of us still volunteer our time or money, or both, for causes we believe in.

Although I have struggled with RLS for more than 25 years, I only learned of the RLS Foundation a few years ago. After discovering the Foundation’s website, I became a member to take full advantage of the information that the Foundation provides. Apart from becoming a member, however, it never occurred to me to volunteer my time. That changed due to an unexpected chain of coincidences.

As you may recall, August of 2017 marked a spectacular total eclipse of the sun that was visible across a wide swath of the continental United States. In the run-up to that eclipse, two of my college classmates started organizing a class get-together in Wyoming in the middle of the “path of totality” of the eclipse. It was shaping up to be a major event for our class, with five days of lectures from experts in astronomy and related fields, and the chance to visit with old friends. We were slated to virtually take over a remote mountain resort in Wyoming on the edge of Grand Tetons National Park, far from a major town. My husband and I were excited about attending, but, with my RLS, I began to worry about the meals we would be served. It sounds trivial, but if those meals were to have lots of salt and sugar, I knew I would not be able to sleep at night, because those are two of my triggers for RLS.

I was reluctant to raise my private concerns about the menus, even though attendance, lodging and meals had to be prepaid. Then one of the organizers asked if any of us had any special dietary requests, so I responded that it would be very helpful to have the option of low-sodium food, because I suffered from restless legs syndrome. It turned out that one of the organizers, Lew Phelps, also has RLS, and had already planned for low-sodium meals! Moreover, Lew had been a stalwart member of the RLS Foundation for decades, and in 2017 he had already chaired its Board of Directors for several years. The eclipse event was a great success. Even better, I was able to sleep well thanks to the foresight of Lew and his brother Chuck.

Long before memories of the eclipse faded, Lew suggested that I volunteer for the board of the Foundation. Unlike corporate boards of directors, nonprofit boards almost always serve without pay, and the members of the RLS board pay their own transportation and hotel costs for the annual face-to-face meeting, as well as all their other expenses. In other words, it truly is a voluntary and financial commitment. Several members of the board are busy professionals in healthcare or other fields. Nonetheless, they volunteer their time to the Foundation because of their passion to educate patients and healthcare professionals about RLS, support scientific research into its causes and management, and ultimately find a cure. I had recently retired from the University of Minnesota after four decades as a professor of European history, and Lew persuaded me that it was time to give back. I joined the Board of Directors in 2017 as one of the “civilian” members of that body – that is, a non-healthcare professional. Since then, by attending meetings of the board and its committees – nearly all online or by phone – I have learned an incredible amount about RLS and about the important work of the Foundation. When individuals make a major donation to the Foundation, members of the board thank them personally. As a board member, I have enjoyed writing to let major donors know how much we appreciate their support.

Lew just stepped down as chair of the Board of Directors after a long and distinguished tenure. One of his final acts as chair was to persuade me to succeed him as chair. Although I do not plan to replicate his long tenure, I hope I can make a useful contribution to the Foundation’s work. It’s the least I can do to thank the Foundation for helping me cope with my RLS.

As members, we receive NightWalkers and have access to webinars and the full library of the Foundation’s publications. Thousands of nonmembers also benefit from free information that the Foundation provides, and it costs time and money to produce that information. The best thing that members can do is to persuade everyone they know with RLS to become members of the Foundation, which does so much for us all.

2020 Federal Spending Package Supports RLS Research

The RLS Foundation continues to advocate for the RLS community on Capitol Hill and across federal agencies. 2019 was an active year, and the Foundation was successful in helping to secure recommendations from Congress through the appropriations process.

Notably, the federal funding bill encourages sleep disorders research at the National Institutes of Health (NIH) – and for the first time, specifically lists “restless legs syndrome.” In late December, Congress passed its final bills, and the president signed both to fund the government in fiscal year 2020.

Following are some of the key recommendations and funding that were included in this important legislation.

Medical Research

National Institutes of Health (NIH):

• Congress appropriated $41.7 billion for the NIH – an increase of $2.6 billion over the 2019 fiscal year. The RLS Foundation worked alongside the broader patient community to ensure that the NIH received a substantial increase in funding to continue vital research that will benefit patients.

• Congress included the following recommendations:

Sleep and Circadian-Dependent Mechanisms Contributing to Opiate Use Disorder. The funding bill specifically recognizes work by the National Institute on Drug Abuse (NIDA) and the National Institute of Neurological Disorders and Stroke (NINDS) to address the opioid crisis through innovative research directions. The bill notes “the promise that research on sleep and circadian mechanisms can play in the prevention and treatment of opiate use disorder” and encourages relevant NIH institutes and centers to work collaboratively to “continue the exploration of innovative research pathways.”

Sleep Disorders. The bill commends “the recent expansion and advancement of the sleep and circadian research portfolio under the coordination of the National Center on Sleep Disorders Research (NCSDR),” and “encourages dedicated research activities on specific sleep disorders, such as narcolepsy and restless legs syndrome, to ensure scientific progress benefits patients impacted by debilitating conditions disordering their sleep and biological rhythms.”

The fiscal year (FY) 2020 NIH Congressional Justification (a document with detailed estimates and justifications for research activities) also emphasizes that restless legs syndrome research continues to be a promising direction for the NCSDR.

Department of Defense:

• The Peer-Reviewed Medical Research Program has been funded at $360 million for FY2020, and sleep disorders has been included again as a category eligible for funding.

Professional Education

Centers for Disease Control and Prevention (CDC):

• Congress budgeted $5 million for the National Neurological Conditions Surveillance System. This initiative aims to expand surveillance of neurological conditions, providing data to increase the understanding of these disorders and to further support neurological research. The system will initially focus on multiple sclerosis and Parkinson’s disease, with the goal to eventually expand surveillance of many neurological conditions.

Department of Veteran’s Affairs:

• Sleep Disorders. The Department of Veteran’s Affairs was previously directed by Congress to assign a program manager for sleep disorders. The new funding bill requires that the Department provide an update to Congress by June 30, 2020. This is an important first step in improving coordination of sleep disorders research across federal agencies and in broader activities.

None of this progress would be possible without the many RLS patients and others across the country who have connected with their legislators locally and in Washington to share their personal stories.

While the RLS community has accomplished much, more needs to be done. In 2020, Congress will continue to take legislative action on funding the government, advancing critical research, and addressing the opioid crisis. The RLS Foundation will continue to advocate for appropriate access to opioid therapy at low total daily doses for RLS patients through targeted outreach to federal agencies and key congressional committees.

The RLS Foundation is looking for individuals to get involved in legislative activities and share their experiences with leaders in Washington. Are you ready to step up? To learn more about RLS advocacy and to view free educational webinars, visit the Advocacy page at www.rls.org or contact the Foundation at info@rls.org.