Restless Legs Syndrome Foundation Blog

JULY 21, 2018

By Kris Schanilec

If you have RLS, you know the relentless leg discomfort that can drive you out of bed at night.

Chances are, you also have two other symptoms: periodic limb movements in sleep (PLMS) – 80 percent of those suffering from RLS display this symptom; and constant wakefulness or “hyperarousal” – people with RLS typically are not sleepy during the day, even if they don’t sleep well at night.

Now, scientists have gained new insight into what causes these symptoms – and new avenues to investigate for treatment.
In 2014 and 2015, Sergi Ferré, MD, PhD, of the National Institute on Drug Abuse (Intramural Research Program) received grants from the RLS Foundation to more closely examine how dopamine and glutamate work in the brain.

Dr. Ferré has found that low levels of receptors of adenosine, a chemical in the brain that regulates neurochemicals, lead to abnormally high levels of glutamate and dopamine. This may be the underlying cause of both PLMS and hyperarousal in RLS. The researchers have also pinpointed a subtype of receptor in the brain – the dopamine D4 receptor – as a new and better target for dopamine drug development.

These findings are the culmination of a four-year study funded by the RLS Foundation, and were recently published in Annals of Neurology¹ and Frontiers in Neuroscience.²

Building on decades of RLS research

Dr. Ferré’s research into RLS builds on decades of science by others on the roles of dopamine and glutamate in the brain for those who suffer from RLS.

It has long been believed that RLS is related to a malfunction in the way the brain uses dopamine. Dopamine is a neurotransmitter (a brain chemical that sends messages) associated with muscle activity and movement. Dopamine medications for RLS act by decreasing the amount of dopamine produced by neurons (brain cells). This has the effect of reducing PLMS. However, use of dopamine medications is limited by the serious side effect of augmentation.

In 2013, scientists at Johns Hopkins identified the involvement of another neurotransmitter – glutamate, which is associated with arousal (wakefulness). Researchers found elevated levels of glutamate in the brains of people who had RLS. The extra glutamate is thought to contribute to PLMS – and to hyperarousal. Many RLS patients take alpha-2-delta medications to control their symptoms by reducing glutamate levels.

In the current study, Dr. Ferré’s laboratory used its first RLS Foundation grant to create an animal model that will help develop and test new RLS treatments. A rodent was fed an iron-deficient diet to mirror the brain iron deficiency found in people with RLS. The researchers invented a method that combines optogenetics and microdialysis. They attached a light-activated protein to specific neurons between the cortex and striatum in the brain of the rodent. When they shone a light on the neurons, this triggered the release of glutamate – which was greater in the animals with iron-deficiency than in animals fed a regular diet.

“The first finding was to show that in the rodent with brain iron deficiency, a well-accepted pathogenetic model of RLS, we were able to show that brain iron deficiency produces increased sensitivity of the cortico-striatal terminals to release glutamate,” says Dr. Ferré. Recently, Dr. Ferré’s team tested this animal model with several RLS drugs: the dopamine agonists pramipexole and ropinirole, and the alpha-2-delta drug gabapentin. The researchers validated that these medications work by counteracting the release of glutamate.

In the process, the team also pinpointed a specific type of protein, called the dopamine D4 receptor, that controls the transmission of glutamate in these cells. This protein may be an effective target for future dopamine medications. “Thanks to this mechanism, we were able to find which subtype of dopamine receptor needs to be targeted,” says Dr. Ferré. “I believe that augmentation is acting on other subtypes. That opens up new hope for therapeutic approaches that probably will have less secondary problems like augmentation and will be more successful.”

Uncovering a new player: Adenosine

If RLS medications work by reversing unusually high dopamine and glutamate levels, how could these high levels be prevented in the first place?

That is the scientific question – and Dr. Ferré feels he may have found an answer in adenosine. Adenosine is a neurotransmitter that regulates the levels of other chemicals; it acts as a brake for the dopamine and glutamate systems in the brain.

Using the animal model, Dr. Ferré’s team found that when there are fewer adenosine receptors (specifically of the A1 subtype), there is increased dopamine and glutamate. This links adenosine to PLMS symptoms.

But there’s more. “Adenosine by the way, regulates the sleepiness associated with prolonged wakefulness,” explains Dr. Ferré. In the cortex, thalamus and other areas of the brain, adenosine modulates homeostatic sleep. Low levels of adenosine receptors could explain the hyperarousal of RLS. “The beauty of the adenosine story is that it connects the hyperarousal symptoms with movement [PLMS],” he says.

“What is really important about our story is that maybe we have found a mechanism – the adenosine system – that links brain iron deficiency to hyperglutamatergic and hyperdopaminergic states.”

This insight can be used to potentially develop RLS treatments that increase the concentration of adenosine to prevent both PLMS and hyperarousal. One such drug is already available clinically: dipyridamole, an antiplatelet drug that protects against stroke and heart attack.

Dr. Ferré’s team validated dipyridamole using the animal model. He also collaborated with Diego García-Borreguero, MD, PhD, director of the Sleep Research Institute in Madrid, to trial the drug in a small group of RLS patients – with promising results. As a next step, Dr. García- Borreguero will coordinate a larger clinical trial in Europe.

Dr. Ferré is also working with several research laboratories to pursue drugs similar to dipyridamole that are more potent and can more easily cross the blood-brain barrier.

“The story now reaches the clinical level,” says Dr. Ferré. “Anything else that could modify the release of glutamate by those terminals could theoretically be good therapeutically for RLS. That’s the case with dipyridamole. We just got results that validate once more our animal model and, in fact, dipyridamole decreases glutamate release by cortico- striatal neuronal terminals.”

Study Results At a Glance

• Using a rodent model of RLS, the researchers showed that people with RLS may have an increased sensitivity in specific brain cells to release dopamine and glutamate.
• They also found that a decrease in the concentration of receptors for adenosine in the brain may cause higher levels of dopamine and glutamate, explaining movement-related RLS symptoms – namely, PLMS.
• Since adenosine also regulates sleep, the low concentration of adenosine may also explain the hyperarousal symptom in RLS.
• Therapies that increase adenosine may help with RLS. Dipyridamole may be one, and others can be developed.
• The researchers also pinpointed a subtype of protein in the brain that can be targeted by dopamine medications, potentially without augmentation as a side effect.

Thanks to the RLS Foundation

Dr. Ferré credits the RLS Foundation with making the last four years of progress in his laboratory possible. “The RLS Foundation research grant has made what we’ve done so far possible. Above all, it has made it possible for a scientist on our team, Gabriel Yepes, to devote his time entirely to this project. And it has been a complete success.”

He also points to the Foundation’s role in cultivating a community of scientists dedicated to solving the mysteries of RLS who support each other’s work. Forty-four researchers have received grants from the RLS Foundation since 1997, and nine have served on the Foundation’s advisory board. Their work spans several continents and many disciplines. “Thanks to the RLS Foundation, I can connect to different specialties quickly and get their input right away,” says Dr. Ferré.

“We are much closer to understanding the mechanisms of RLS. If you understand the mechanisms, that directs your research,” he adds. “We are very close to getting new approaches – not just new molecules that are acting the same way. We are discovering new mechanisms, and that should open a line to new approaches. To hope.”

¹Yepes G, Guitart X, Rea W, Newman AH, Allen RP, Earley CJ, Quiroz C, Ferré S. Dec 2017. “Targeting hypersensitive corticostriatal terminals in restless legs syndrome.” Ann Neurol 82(6): 951–60. doi:10.1002/ana.25104.
²Ferré S, Quiroz C, Guitart X, Rea W, Seyedian A, Moreno E, Casadó-Anguera V, Díaz-Ríos M, Casadó V, Clemens S, Allen RP, Earley CJ, García-Borreguero D. 2018. “Pivotal Role of Adenosine Neurotransmission in Restless Legs Syndrome.” Front Neurosci 11: 722. doi:10.3389/fnins.2017.00722.

JULY 15, 2018

In June, the RLS Foundation visited Washington for a second round of meetings to advocate for research funding and for continued patient access to opioid medications to treat severe RLS.

Led by Executive Director Karla Dzienkowski, the Foundation team met with members of Congress who are on key legislative committees that have jurisdiction over health policy, and with two groups at the National Institutes of Health (NIH).

“Our meetings at Congress and the NIH were very important to moving our advocacy program forward,” Dzienkowski says. “We had the opportunity to meet with Congressional staff who are directly involved in opioid-related legislation. We are also excited to be deepening our relationships at the NIH and taking meaningful steps to advance RLS research.”

The Foundation team met with staff in the offices of Sen. Sheldon Whitehouse, D (RI); Sen. Bob Casey, D (PA); Sen. Elizabeth Warren, D (MA); Rep. Markwayne Mullin, R (OK); Rep. Conor Lamb, D (PA); Rep. Katherine Clark, D (MA); and Rep. Michael Burgess, R (TX).

The discussions centered on the need for a safe harbor for RLS in any upcoming legislation or policy that might restrict access to opioid medications. “Staffers shared that over 50 opioid bills are under consideration,” says Dzienkowski. For the millions of Americans who have chronic, unrelenting RLS, opioid medications taken in low total daily doses can be very effective for controlling symptoms.

The Foundation team also asked legislators to support two research priorities: $2 billion in increased funding for the NIH in fiscal year 2019; and continued inclusion of “sleep disorders” as a category eligible for grants by the Department of Defense.

At the NIH, John Winkelman, MD, PhD, gave a presentation on behalf of the Foundation to the Sleep Disorders Research Advisory Board (SDRAB) of the National Heart, Lung, and Blood Institute. Dr. Winkelman is director of the RLS Quality Care Center at Massachusetts General Hospital and a member of the Foundation’s Scientific and Medical Advisory Board.

The SDRAB is a federal advisory committee that sets the strategy for sleep disorders research at the NIH, and the meeting was an opportunity to highlight the unmet needs of RLS patients. RLS Foundation Board member Linda Secretan is one of two patient advocates on the SDRAB.

In his presentation, Dr. Winkelman discussed limitations of RLS treatments and the importance of research, including his current study to evaluate the long-term use of opioids to treat RLS.

“We had a very positive discussion,” Dr. Winkelman says. “It was important to describe the existing landscape of RLS treatment options, particularly as not everyone at the table was fully aware that many people with RLS continue to suffer for a variety of reasons, such as augmentation. It was equally important to raise awareness about the effectiveness of low total daily doses of opioid medications as a therapy for severe RLS.”

The Foundation also visited the National Institute on Drug Abuse and met with members of the Division of Neuroscience and Behavior, which supports research on drug use and addiction. Dr. Winkelman led a lively discussion on the neuroscience of RLS and how new drug therapies might be developed to treat the disease.

“We’re always looking for new ways to intervene to prevent or treat RLS,” Dr. Winkelman says. “We discussed what we already know about what causes RLS in the brain, and the various ways we might learn more about the neurological pathways involved. We came away with new ideas to explore for research.”

The meetings were coordinated by the Health and Medicine Counsel of Washington (HMCW), a government relations organization with nonprofit and healthcare industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. In addition to Dzienkowski and Dr. Winkelman, the delegation included Kris Schanilec, RLS Foundation communications; and Dane Christiansen, Dale Dirks and Peter Herzog of HMCW.

How You Can Take Action

The RLS Foundation is working hard to advocate on behalf of the RLS community. The Foundation needs you, an RLS patient or family member, to amplify these efforts by meeting with your legislators. You can meet with your members of Congress at offices in your home state or in Washington. Elected officials want to hear directly from their constituents, and sharing your personal experiences is the best way to educate them about the needs of RLS patients.

The Foundation has resources to help you get started. Contact Peter Herzog at herzog@hmcw.org or visit www.rls.org to learn more.

RLS Advocacy: Our Progress

Since October 2017, the RLS Foundation and its partners at HMCW have:

• Delivered letters to members of Congress from 200+ individuals who responded to a request for personal stories about opioid medications and RLS. 
• Attended Congressional meetings and hand-delivered position letters to committees that are crafting legislation related to opioid medications and/or biomedical research funding. These efforts helped support passage of the FY2018 appropriations bill, securing a $3 billion increase in funding to the NIH. 
• Delivered 40 letters to members of the Senate Defense Appropriations Subcommittee from RLS Foundation members who responded to an Action Alert to support inclusion of “sleep disorders” on the Department of Defense Peer Reviewed Medical Research Program in FY2019. 
• Met with 23 Congressional offices, three NIH institutes, the NIH Sleep Disorders Research Advisory Board, and the U.S. Food and Drug Administration (FDA). 
• Coordinated or supported meetings by the RLS Foundation team and Foundation members with US senators and representatives of 13 states.

Why Are Opioids Needed for RLS?

About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Unfortunately, treatment options are limited, and FDA-approved medications for RLS often have serious, long-term side effects.

When all other options have failed, opioids at low total daily doses are an established, highly effective treatment option for people with RLS. Clinical experience among experts has not shown the degree of drug misuse, dependency or addiction commonly associated with opioid use to treat chronic pain. The RLS Foundation actively conducts educational outreach to help ensure that healthcare providers know how to diagnose and treat RLS, including appropriate use of opioid medications. For more information, visit www.rls.org.

JULY 15, 2018

Contact the Food and Drug Administration (FDA) and ask them to maintain access to opioids in low total daily doses for patients with refractory RLS

Decision makers at the FDA are requesting comments by September 10, 2018 from patients who utilize opioid therapies to manage their chronic conditions. Agency officials want to hear from refractory RLS patients on how they manage their condition and barriers that are affecting their access to treatment.

Background

On Monday, July 9th, the Restless Legs Syndrome (RLS) Foundation participated in a Patient Focused Drug Development (PFDD) meeting hosted by the FDA. The goal of this meeting was to incorporate patients’ voices as the agency develops guidance on opioid therapies for chronic pain, refractory RLS, and other conditions that utilize these treatments.

RLS is not considered to be a chronic pain condition, because its underlying mechanisms and neuropathology are very different. The Foundation urged regulators to appreciate the differences. This is why it’s important for the RLS community to take part in these discussions, because the perspectives shared will inform the FDA’s decision making on regulations that will affect refractory RLS patients who utilize low total daily doses of opioids to manage their condition.

At the July meeting the FDA welcomed input from a variety of people using opioids to manage chronic conditions. The FDA is now seeking input from patients who were unable to attend in person. Written comments will add weight and depth to the presentations made at the meeting.

Given the high level of concern about opioid related deaths, it is critical that RLS patients make their voices heard at this crucial moment in the policymaking process! In response to these questions, always make sure to note that RLS is different from chronic pain and requires any regulations or legislation take this difference into account. Now is your chance to speak up, to share your experiences and frustrations.

Take Action

• Go to the FDA’s online portal for submitting electronic comments to submit feedback at https://www.regulations.gov/document?D=FDA-2018-N-1621-0001 and click on “Comment Now” at the right of the page. 

• Tell the FDA about RLS, how you manage your symptoms, and what kind of barriers have affected your access to treatment. You can use the suggested discussion topics below to inform your comments.

Feel free to answer the questions directly or simply review them to help guide your response:

Topic 1: Symptoms and Daily Impacts

1. How would you describe your RLS symptoms? (Characteristics could include location, radiation, intensity, duration, constancy or intermittency, triggers etc.)
2. What are the most significant symptoms that you experience resulting from your condition? (Examples may include restricted range of motion, muscle spasms, changes in sensation, etc.)
3. Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include work or school activities, sleeping through the night, daily hygiene, participation in sports or social activities, intimacy with a spouse or partner, etc.)
4. How has your condition changed over time? (Considerations include severity and frequency of symptoms and the effects of RLS on your daily activities.)

Topic 2: Patients' Perspectives on Current Approaches to Treatment

1. What are you currently doing to help treat your RLS? (Examples may include prescription medicines, over-the-counter products, and non-drug therapies.)
a. How has your treatment regimen changed over time, and why? (Examples may include change in your condition, change in dose, or treatment side effects.)
b. What factors do you take into account when making decisions about selecting a course of treatment?
2. How well does your current treatment regimen manage your chronic condition?
3. What are the most significant downsides to your current treatments, and how do they affect your daily life?
4. What challenges or barriers to accessing or using medical treatments have you or do you encounter?

Electronic comments must be submitted on or before September 10, 2018. Make sure to let the RLS Foundation know you participated in this campaign!

JULY 12, 2018

Ode to RLS/PLMD

A Poem by Isabella Horsky

Isabella has been an RLS Foundation member since 1998.
I'm sitting in the concert hall, the show will soon begin.
The orchestra is tuning up - the horns and first violin.
They finish the first movement of a Haydn symphony,
When I start feeling tickles, and I know the augury:
Before the measure ends, my leg involuntarily
Jerks upward in a spasm that the person next to me
Can't help but notice. And when twenty seconds pass and then,
In spite of my best efforts, that leg levitates again,
He looks at me as if he thinks that I might be contagious.
To cope with my embarrassment I find it's advantageous
To get a seat right by the aisle. And that is just in case
My PLMD gets so bad, I have to leave the place.
Now Haydn is concluded and they're playing Bach or Lizst,
And I'm outside, lamenting all the music that I've missed.

It's not much different on a plane. Soon after we depart
I feel the same sensations in one leg. It soon will start
To jump and jerk for several seconds, twenty then of respite
Before the next. Whate'er I try, I never can arrest it.
But now I can't get up and stretch. I have to stay and sit,
Because my legs don't understand the seat belt sign is lit.
My neighbor notices my twitch. With look of trepidation
She wonders if, when she gets home, she'll need inoculation.
She looks away, uncomfortable, and then she starts to doze.
I wish my legs would follow suit and grant me some repose,
I eat a snack, recline my seat and try hard to relax.
To no avail. Just then a leg maliciously attacks,
Providing for my body even greater turbulence
Than pilots flying through a wind storm might experience.

So now let's say I stay at home. I have some time that's free.
I'd like to knit, do puzzles or compose some poetry.
But if I want to just be still, to read a book or pray,
My legs soon start to twitch as if they want to run away.
And if, by chance, I think I'd like to take a little nap -
You guessed it: Pretty soon a leg begins to tense, then flap
And jerk. It acts as if it were an independent thinker.
And if I had some booze, I might become a heavy drinker.
I shuffle pillows, toss and turn, then lie this way and that.
The dog jumps off my bed and slinks forlornly to his mat.

Then after supper in the evening is the time I dread
Because I know the old routine when I must go to bed.
I read a gentle novel or I listen to some Bach.
I make a point of never looking over at my clock
To see how many minutes of that twitching might have passed.
I wonder if each spasm will turn out to be the last.

So now of sleep I've been deprived for over 40 years.
The thought could very soon engender bitterness or tears
Of helplessness, frustration. Truth to tell, I can't conceive
Of life without PLMD, but somehow I believe
There is a loving God who will continue to provide
The energy that comes from rest, of which I've been denied.
If daily He did not help me to grow in this conviction,
I'd find it quite impossible to deal with my affliction.
Besides which, spending every day in scowling, grumpy mood
Will use up far more energy than simple gratitude.

June 21, 2018

By Kris Schanilec

For many people who have Alzheimer’s disease, evenings are difficult. Right around sundown, uneasy feelings and confusion start to flow. The person may become forgetful, agitated – even aggressive, and start pacing or wandering. These symptoms can last through the night and make it tough for anyone in the household to get a good night’s sleep.

Could it be that these behaviors – known as nighttime agitation, or “sundowning” – are caused by RLS? And could treating the RLS lessen the nighttime agitation symptoms?

Researchers led by Kathy Richards, PhD, at the University of Texas at Austin are working to answer these questions. Dr. Richards and co-investigator Christine Kovach, PhD, from the University of Wisconsin-Milwaukee have been awarded a $3.9 million, five-year grant from the National Institute on Aging to evaluate whether there is an association between nighttime agitation and RLS in people who have Alzheimer’s disease.

“Nighttime agitation is the No. 1 reason why people with Alzheimer’s cannot be cared for at home,” says Dr. Richards. “If we can find a better and more precise way to treat nighttime agitation, we can improve the quality of life for many persons who are living with Alzheimer’s disease.”

Nighttime agitation is often treated with powerful antipsychotic drugs, which are only moderately effective and carry with them serious risks, such as falls, stroke and death.

Because nighttime agitation has a strong circadian component and shares symptoms with RLS, Dr. Richards and others have long postulated that for some people, undiagnosed RLS could be the underlying cause. In a previous study led by Dr. Richards, researchers examined symptoms in 59 people who had Alzheimer’s disease and nighttime agitation. They found that 24 percent of participants also had RLS.

In the current research, the team will validate this result in a pilot study – an eight-week, double-blind, randomized controlled trial with 136 long-term care residents who have nighttime agitation and RLS. Participants will receive either gabapentin enacarbil (Horizant, an FDA-approved medication for treating RLS) or a placebo. Data from the study will also help discern the effectiveness, safety and optimal dosage of gabapentin enacarbil for treating nighttime agitation, as well as whether the frequency of RLS symptoms may be linked to nighttime agitation.

The researchers will use a tool newly developed by Dr. Richards called the Behavioral Indicators Test-Restless Legs. This test includes a brief 20-minute observation and simple set of questions for caregivers. Previous studies have shown the tool to be an effective way to diagnose RLS in people who have Alzheimer’s, and one that has potential for future use with children and others who don’t have the ability to report their symptoms.

RLS Foundation Executive Director Karla Dzienkowski visited the University of Texas in May, where she gave a presentation about RLS and met with Dr. Richards’ team to extend the RLS Foundation’s support for the research endeavor. “Cognitively impaired seniors with RLS may have difficulty expressing RLS symptoms causing an inability to sit or lie still during the evening or nighttime hours,” says Dzienkowski. “This study will ensure seniors with cognitive impairments are accurately diagnosed and receive proper treatment to manage their RLS symptoms.”

Dr. Richards emphasizes that while there is no evidence suggesting that RLS causes Alzheimer’s, the study may show that it’s important for caregivers of people with any type of dementia to watch for possible signs of RLS that can then be treated to potentially reduce nighttime agitation.

It all comes down to quality of life for people who have dementia, says Richards. “I hope they will be more comfortable, and that they – and their caregivers – can get a good night’s sleep.”

Kathy Richards, PhD, is a member of the RLS Foundation Scientific and Medical Advisory Board. Read more about her research on the University of Texas at Austin School of Nursing newsletter.

“Does the new tax law take away my tax benefit when I make a contribution to the Foundation?”
At the RLS Foundation, we have been hearing this question from many of our donors, supporters, members and friends. We consulted with tax experts, and based on their analysis, we believe the correct answer is, “Probably not, but it depends.” In fact, the new tax law has actually made charitable giving more affordable for many donors!

Don’t believe the headlines

You may have heard reports that charities like the RLS Foundation risk losing millions of donations because more taxpayers may qualify for the newly doubled standard deduction (up from $12,000 to $24,000 for married taxpayers filing jointly, with an added $1,300 for each spouse age 65 or older).
But depending on their circumstances, this higher standard deduction could mean donors have more money available to support their favorite causes. Moreover, the newly lowered tax brackets mean that donor incomes may be taxed at lower rates overall.
If the new law generates greater tax savings for someone, then part of those savings is available to donate. The surprising result may be that the new tax law actually increases charitable giving.

More advantages to giving! 

Meanwhile, the new tax law has created or maintained other tax advantages that specifically benefit charitable giving:

• There is a cap on how much of a contribution may be deducted in a year when comparing that gift to the taxpayer’s income. The new law raised that cap from 50 percent of income to 60 percent, which could allow for a larger annual tax deduction. 
• Also, people age 70 1/2 or older who must take an annual required minimum distribution (RMD) from their IRA can continue to make a qualified charitable deduction (QCD). This allows them to make a contribution of up to $100,000 directly from their IRA to a charity – which can satisfy part or all of their RMD (or exceed it) but not count as taxable income. And, they can still take a standard deduction on top of it. 
• The new tax law continues to offer the opportunity to donate appreciated stock and deduct the increased value, subject to a 30 percent limit of taxpayer’s income. The amount over the 30 percent of income can be carried over for up to five years and deducted in future years. 

Keep on believing

The question every donor should ask him or herself is: “Why do I give?” At the RLS Foundation, we feel (and studies have shown) that donors give first and foremost because they believe in the causes they support.
Getting a tax benefit is a nice bonus, but what motivates supporters like you to make a gift, whether it’s $25, $250, or even $25,000 or more, is knowing that you’re doing your part – connecting personally to a mission that’s important to you. We give because we care. The new tax law doesn’t change this fact at all.
So, our advice to all our supporters is to look past the gloomy headlines from last fall and winter. Speak with your tax advisor about ways to maximize your tax benefits. ... And, when it comes to our work to find a cure for RLS (and the other worthy causes you support) – keep on believing!
The possible tax advantages of charitable giving described above are illustrations only and may not apply to specific taxpayers’ circumstances. To determine whether you may have tax benefits associated with charitable giving, consult with a certified public accountant, tax return preparation specialist or other qualified financial adviser.

Take Action This Summer!

During the summer, elected officials in Washington break for recess and return to their home states. This is an excellent time to meet with and educate them about RLS, how opioid restrictions are affecting access to necessary treatment, and why more RLS research is needed to find a cure.
The Foundation needs you, a valued and essential member of the RLS community, to join in this important work. Your representatives need to hear your personal story about the struggles of living with RLS. These personal anecdotes put a face to the disease and are crucial to share so that legislators are fully aware of the needs of the RLS community when making legislative decisions.
Not sure where to start? It's easier than you think. The RLS Foundation’s advocacy partners at the Health and Medicine Counsel of Washington (HMCW) are available to assist you in planning and implementing these meetings with your representatives. Contact Peter Herzog at herzog@hmcw.org, or keep reading for information on how to get started.

First Steps

Find out who your representatives are. Each US citizen has three representatives in Congress: Two in the Senate, and one in the House of Representatives. You can find out who they are at www.senate.gov and www.house.gov. Just enter your zip code into the search bar in the top right-hand corner of the page to bring up their names. Many of these officials have offices both in Washington and locally, so select the office closest to you.
Reach out to HMCW. Contact Peter Herzog at herzog@hmcw.org, and he will provide you with talking points, a prep packet and other information to help with the meetings. He may also be able to help schedule meetings.
Make an appointment. Call the office of each representative and request an appointment to discuss issues that you and others with RLS are facing. You will likely be given an appointment with a staff member. Keep in mind that you will be meeting as an individual in the community and not as a representative of the RLS Foundation. If you are a Foundation member, please share this during your meeting.
Strength in numbers. You are not alone! Get a group of friends, family members or other RLS patients to go with you to the meeting. You can also find others who have RLS via the Foundation's Discussion Board, support groups and social media channels.

Resources

While you may have many items that you wish to discuss with your representatives, focusing these particular meetings on issues related to RLS will help make the most impact. The goal is to educate your representatives about RLS, how opioid-related legislation affects you and the RLS community, and why more research funding is needed. The Foundation has a variety of resources to help you accomplish this.
Webinar recordings. The Foundation and HMCW have presented two RLS advocacy webinars, available for free viewing in the "Get Involved" section at www.rls.org. These webinars contain excellent introductory information to RLS advocacy efforts and provide an overview of how you can get involved.
“Statement of Principles.” This document (provided in your prep packet) will be your "North Star" during the meetings and help guide your discussion. While you do not need to memorize all of this information, it will provide the basics about RLS, why more research is needed and why opioid therapies are necessary for patients with severe cases of RLS. Available for free download in the "Get Involved" section at www.rls.org.
HMCW. The Foundation has engaged HMCW staff to guide and focus advocacy efforts on behalf of the RLS community. They are available to help! Email Peter at herzog@hmcw.org with any questions or if you need additional information.

During the Meeting

What to expect. Congressional staff should be friendly and courteous. Remember, they work for you! Their goal is to help you in any way they can, and your “asks” will give them an opportunity to do so. You should arrive 15 minutes early for your meeting and dress in business casual attire. Make sure to print the leave-behind materials beforehand (provided by HMCW or available for download at www.rls.org), as you will be giving them to staff members during your meetings. Keep in mind that you will have 15–20 minutes to make your case, so be ready to start right in with the discussion.
Introductions. Start by thanking the staff member for meeting with you. Introduce yourself and talk about where you are from, then introduce everyone in the group. Be sure to keep the introductions brief so that most of your time is spent educating the representative about the needs of the RLS community. Give the staff member the leave-behind materials to reference during your discussion.
Defining RLS. The person you meet with may not know about restless legs syndrome, so it is important to define what it is. Here is a suggested explanation: “Restless legs syndrome (RLS) is a serious and chronic neurological disease. It causes unpleasant or uncomfortable sensations in the legs, together with an uncontrollable urge to move them. These symptoms can cause severe sleep loss, which can be devastating to a person’s health and well-being, and interfere with work, family and social life. There is no cure for RLS, and treatments are limited.”
Tell your RLS story. How do RLS symptoms impact you day-to-day? What challenges does RLS pose for your work, social life and family relationships? Do you have issues accessing medical care? Everyone's RLS is unique, and it's important to focus on your own experience and how RLS impacts your life.
Introduce the “asks.” Your prep packet provided by HMCW will include a sample meeting outline with specific requests, or “asks,” to make of your legislator. Make sure to review these materials before your meeting. You may want to write down some key points on a note card for reference. In the meeting, state the “asks” clearly and concisely, or read them from the document. Staffers will want to learn how their office can help you, and these “asks” are the best way for them to do so.
Responding to questions. The person you are meeting with may have some questions. If you are asked a complex question that you do not know the answer to, that is okay! Be honest. Let the staff person know that you will find the information and get back to them in a follow-up email.
In the event that you are pressed about RLS patients taking opioids, or you feel that someone is questioning or delegitimizing your struggles with RLS, remain calm and respectful. This will be rare, but it is always good to be prepared. RLS is an underdiagnosed condition, and many people are unaware of its prevalence and severity. Remind the staff person that opioid medications are a last resort for patients suffering from RLS, and that guidelines are available for physicians to prescribe them appropriately. Ask that the staff person review the written materials in the leave-behind packet, which includes the clinical guidelines (“The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome”).
Conclusion. Thank the staff member for taking the time to meet with you. The staff member will most likely give you a business card, so be sure to hang onto it for future inquiries. Consider this a relationship-building activity, and plan to follow up with the office a few times a year moving forward. If you brought a camera or phone, ask if you can step outside the office to take a picture together in front of your legislator’s nameplate, to share with the Foundation or on social media. Have fun with it!

After the Meeting

You’ve met with your legislator’s staffer, educated them about RLS, and asked them to support the needs of RLS patients. Give yourself a pat on the back for a job well done!
Make a note in your calendar to follow up by phone or email within two weeks. You can thank the staff person again for meeting with you and provide any follow-up answers to questions. This would also be a great time to plug the Foundation's website at www.rls.org, or share a clip from the Foundation’s YouTube series, My RLS Journey. You can also contact Peter Herzog at herzog@hmcw.org for help with your follow-up messages.


To read more about the Foundation's advocacy efforts, accomplishments, and how you can get involved, visit www.rls.org.