Restless Legs Syndrome Foundation Blog

January 31, 2022

NIH releases the 2021 Sleep Research Plan

The Sleep Research and Sleep Disorders Research Advisory Board is congressionally mandated to develop the US Sleep Research Plan every five years. Established in 1993 by the US Congress, the National Center on Sleep Disorders Research (NCSDR) is part of the National Heart, Lung and Blood Institute (NHLBI), whose focus is to study the toll that sleep disorders and sleep loss have on productivity, longevity, illness, and mortality. The Sleep Disorders Research Advisory Board (SDRAB), which is an advisory board to the National Institutes of Health and National Sleep Center is responsible for writing the Sleep Research Plan.

RLS Foundation Board Member and SDRAB Member, Linda Secretan, was directly involved with writing the 2021 Sleep Research Plan. She helped to determine the plan’s key strategic goals and priorities.

The plan comprises five specific goals:

1. Sleep and Circadian Mechanisms Underlying Health and Disease
2. Risk Reduction and Treatment of Sleep and Circadian Disorders
3. Clinical Implementation of Sleep and Circadian Research
4. Sleep and Circadian Disruptions and Health Disparities
5. Foster the Development of a Strong and Diverse Workforce for Sleep and Circadian Research

These five goals provide opportunities for research in sleep and circadian rhythms but also encourage research into other areas of interest in the field of sleep. Secretan’s input helped shape the final plan, which includes nine critical opportunities that seek to expand research in the science of circadian and sleep research.

Sufficient sleep is an essential requirement for overall health and wellbeing, yet half of all US adults and three-quarters of teens report sleep deficiency – factors that impair sleep quality, sleep quality, and total sleep time. The 2021 Sleep Research Plan is a comprehensive document that highlights the importance of sleep and personal strategies to ensure restorative sleep. The plan also underscores the importance of sleep in overall health maintenance and disease prevention.

Sleep is an essential pillar to health maintenance just as diet and exercise. However, sleep is often the pillar given the least attention in health promotion activities. Yet, all three pillars need equal attention for optimum health and disease prevention.

The 2021 Sleep Research Plan will advance the science of sleep and circadian research leading to better patient outcomes for those living with sleep disorders.

A special note of thanks to the over 200 RLS community members who attended the Virtual Congressional Briefing on Tuesday, January 25, 2022, to announce the 2021 Sleep Research Plan.

February 17, 2020

2020 Federal Spending Package Supports RLS Research

By Kris Schanilec

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.

Be Visible, Be Heard

By Linda Secretan, RLS Foundation Board Member & Support Group Leader

An excerpt from the Summer 2016 edition of NightWalkers, the Foundation's quarterly magazine

SDRAB. In some ways an appropriately dreary acronym, but hidden within is sunny opportunity. As one of your RLS Foundation board members, I drew the lucky straw when the opportunity came around for one of us to serve on the Sleep Disorders Research Advisory Board (SDRAB) of the National Institutes of Health (NIH) last year. When Congress authorized the NIH to develop a Sleep Research Plan, it also provided that it be updated every five years. This is the year, and we, the RLS community, have a seat at the table.

A decade and a half ago, RLS Foundation Board of Directors members Bob Balkam and Bob Waterman (chair emeritus) stormed the doors of the NIH to create awareness about RLS. From this came the early conferences about sleep and sleep disorders and the recognition of RLS as a real concern affecting the lives of real people – like us, our children, our parents. Thanks to our two advocates, to successive RLS Foundation boards and to you, the scope of that early effort has grown, and we are still invited to participate in shaping the research to come.

Here I need to sort out any impression that I’m sharing scientific expertise with my brainy cohorts who are leaders in sleep research. The title I’ve privately given myself is “ordinary person on the board.” It’s exciting to hear what leading researchers and clinicians are up to, but it can be intimidating to step up, to speak and to contribute. When that happens, I remember the words: You are not alone.

Truly, I am not alone at that long conference table. All of you, over 4,000 [members] strong, are right behind me. I hear your frustrations, your questions, and your hope for better treatments and a cure ringing in my ears. I remember how positive action spirals upward. I remember that I am the voice for all of us in this larger community. That is the role for which I have a clear charter. I represent patients – the ones whose concerns are not visible even to physicians and may be ignored by the research community.

You know someone with asthma, don’t you? You may have heard the sound of wheezing and seen the effect of breathing disorders on an active life. Physicians are in the business of helping, fixing and making it better. With asthma, they can see, hear and understand what’s right in front of them, and manage it from a solid base of knowledge and training. With sleep disorders? Not so much.

Research helps because it quantifies. It supplies proofs. When a physician can consult research, he or she is on solid ground for then managing or unearthing a cure. But where is the link when the doctor can neither consult research nor see the symptoms, and has not been trained to look for the effects of sleep disorders – insomnia, fatigue, depression, job loss and diminished quality of life – or even to ask the questions? This missing link is what our contribution to SDRAB is all about.

On SDRAB, we are starting to draw together the many strands of this Sleep Disorders Research tapestry to create the 2016 Research Plan. What is the thread that runs through it all? Over and over again in the margins of my notes there is one word. Over and over I reach for the mic to speak the word again. Over, many times over, I play my broken record in our working group. You have guessed already. The word is awareness. Awareness is fundamental to our aims. If you start to unravel the fabric, you’ll have a hard time finding the beginning, so tightly is the need for awareness woven into the whole.

Without medical school training, physicians will continue to be blind to our disease. Without important research to back up the need, medical schools will not incorporate training. Without the prize of recognition that accompanies well-funded landmark studies, researchers will ignore opportunities to pursue the byways of sleep.

Without awareness of the impact of disordered sleep on lives, careers and families; of what one can contribute and who one can become, there will be no reason for deep-pocket sponsors to fund research. The NIH is a source of major funding, but underwrites only 10–15 percent of the proposals that come their way. To secure a portion of this funding, proposals for sleep research must ride in on rails of urgency.

As individuals, we give what we can through the RLS Foundation, providing crucial funds for studies that can grow to NIH stature. This generosity is a vital ingredient and has enabled big leaps in our understanding of RLS. But there is more: It is up to us to raise our voices wherever we are. We don’t usually think of ourselves as fist-raised, storm-the-barricades activists. Yet simply by being prepared to champion something we believe in and take action wherever we can, we will make strong that thread of awareness. We can assure that our voice is heard. You already have, you know. I applaud your efforts!

So many of you answered the urgent call to comment on the Request for Information from the NIH* that you jammed the NIH communication center with calls to report a faulty email link! Rarely does the public respond so well when invited to give input. Congress hears from only 4–5 percent of constituents – even with email and click-and-send forms. Be visible. Be heard. Even a small step, like sending a memo will help. And it will make you feel more alive, more enriched and happier. How can I be sure? There is research to support that!

*Editor’s note: In May 2016, the NIH sought public input on its Sleep Disorders Research Plan

Stay tuned for the Winter 2017 NightWalkers for advocacy tips from Linda!