New Approach to Treat Augmentation

The RLS Foundation's Scientific and Medical Advisory Board (SMAB) recently approved funding for a research proposal by Dr. William Ondo of Houston Methodist Neurological Institute, an RLS Quality Care Center.

After a rigorous selection process, the committee approved Dr. Ondo's grant for Foundation funding for a research study. Dr. Ondo explains:

"Augmentation is a condition where RLS symptoms start to worsen after initially improving, while on dopamine agonist treatments such as pramipexole, ropinirole, Neupro, and levodopa. Since most patients with an urge to move initially respond to properly dosed dopaminergic medicines, augmentation is arguably the biggest practical impediment to successful chronic management of RLS.

"The exact mechanism of augmentation is not known, however, based on animal studies we performed, we hypothesize that it is caused by increased activity of dopamine type I (D1) receptors. In animal models these receptors in the spinal cord increased when mice models of RLS were chronically treated with typical dopamine drugs, specifically pramipexole. Dopamine type I receptors have many features which are the exact opposite of dopamine type 2 (D2) and 3 (D3) receptors in the spinal cord. The dopamine medicines still stimulate these D1 and the D2/D3 receptors, which we feel results in the contradictory effect that they both improve and worsen RLS at the same time.

"We have identified an investigational drug which blocks D1 receptors without blocking D2 and D3 receptors, ecopipam. In this small trial, we will administer this drug in a blinded manner to patients already on dopamine medications who have augmentation, to see if it can reverse the augmentation and improve their symptoms."

Dr. Ondo serves as director of the Movement Disorder Clinic at the Houston Methodist Neurological Institute. Throughout his career, Dr. Ondo has written more than 250 articles and book chapters. A movement disorder specialist, he is board certified in adult neurology and sleep medicine. Dr. Ondo's research specializes in Parkinson's disease, essential tremors, the use of botulinum toxins in treating movement disorders, and restless legs syndrome. At the RLS Foundation, Dr. Ondo is an active member of the SMAB Opiates Committee.

“Dr. Ondo’s proposal presents an exciting opportunity to investigate a new approach to treat RLS augmentation," says RLS Foundation Executive Director Karla Dzienkowski. "As the only organization with a dedicated RLS Research Grant Program, it is our hope that research like Dr. Ondo’s will lead to new and better treatments and one day, a cure for patients living with RLS.”

Since its inception in 1997, The RLS Foundation's research grant program has funded nearly $1.6 million in competitive research grants for the study of restless legs syndrome. In 2016, the Foundation committed to develop this program even further by:

• Increasing research funding to $200,000 annually for up to eight pilot grants
• Accepting grant proposals on a continual basis, rather than just once per year, using a rigorous NIH review to evaluate grant proposals
• Providing counsel to RLS Foundation grant seekers to improve the strength and outcomes of their research studies
• Identifying potential sources (NIH) of later-stage funding for grantees
• Expanding the reach to biotech and medical technology companies as collaborators that can help achieve progress toward a cure

Interested in applying for a research grant on RLS? Read about the guidelines and application here.

Foundation raises over $4,000 in 24 Hours

Last week, the RLS Foundation raised a total of $4,245 during the annual Amplify Austin fundraising campaign!

This was a day to celebrate and support nonprofits based in the Austin area, the organizations that work hard to serve others.

On March 2-3, $9.8 million was raised for 700 local organizations through 64,678 individual donations during the 24-hour period. The Foundation is honored to have been a part of this wonderful campaign!

These donation dollars will go towards increasing RLS awareness, improving the Foundation's certified Quality Care Center network, and supporting our robust research program dedicating to finding a cure for RLS.

Thank you to all who donated!

Setting Up Your Individual Fundraising Page

Amplify Austin celebrates Austin's annual day of online giving. For 24 hours, the community comes together to support the city's local nonprofits!

Over the last four years, Amplify has raised over $24.7 million for hundreds of local organizations. In 2016 alone, 40 percent of the 61,625 donors were first-time givers to nonprofit organizations, and a total of $8.5 million was raised for over 600 Central Texas nonprofits.

This is the day to celebrate and support nonprofits based in the Austin area, the organizations that work hard to serve others. In 2016 alone, The RLS Foundation certified five additional RLS Quality Care Centers, reinvigorated our research grant program by committing to award up to eight new pilot grants totaling $200,000, developed a Teen Guide and Children's Booklet, created a multidisciplinary Scientific and Medical Advisory Board, and rolled out our Year of Augmentation, just to name a few!

And guess what? This online day of giving is not just restricted to the Austin area!. This 24 hour period celebrates local nonprofits, and encourages donations from supporters everywhere! Whether you have supported us for years, or are considering donating for the first time, Amplify with us!

Now is the time to get involved. You can set up your own individual fundraiser on behalf of the Foundation! Create your own fundraising goal and rally your community to donate to support your cause. Your fundraiser will be featured on the RLS Foundation page!

Check out Patty Pillow's fundraiser to see what your fundraiser could look like. See the steps below to get started!

How to Set Up an Individual Fundraising Page

1. Go to the Foundation's AmplifyATX page

2. Click "Create a Fundraising Campaign," Then Click "Create Account"

3. Fill Out Form + Create Account

4. Campaign Type: Amplify Austin Day

5. Create Your Own Fundraiser Title

6. Fundraiser Summary: Tell Your Story, Why People Should Donate to Your Page

7. Personalize Your URL Link

Have questions? Email or call us at 512-366-9109.

4 Easy Steps to Donate

The RLS Foundation is participating in Amplify Austin for the second year in a row!

Amplify Austin is a 24 hour power fundraiser for Austin, Texas area nonprofits starting at 6 p.m. on March 2. We need your help to show the Foundation's home city just how strong and committed the RLS community is!

Our goal is to raise $15,000 in 24 hours to increase RLS awareness, improve the RLS Foundation certified Quality Care Center network, and add support for our robust research program to find a cure for RLS.

And thanks to a generous donor, this year we have a match up to $2,500!

Mark your calendars for March 2 ... or "set it and forget it" by scheduling your gift NOW!

4 Easy Steps To Donate:

1. Pre-schedule NOW, or on March 2 at 6:00 p.m. go to: amplifyatx.ilivehereigivehere.org/RLSFoundation

2. Click the 'Donate now' button

3. Enter your donation amount and required information

4. Help us spread the word by sharing your donation on Facebook or Twitter with the hashtag #AmplifyRLSF!

You can also create an individual fundraising campaign, set your own fundraising goal, and rally your community to help this cause you care about! Visit our Amplify page and click 'Create a Fundraising Campaign' on the right side of the page.

Need some help? Our next blog post will highlight the steps to making your own fundraising campaign - stay tuned!

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!

The 11th Addition to Our QCC Network

On Jan. 15 Massachusetts General Hospital was certified as an RLS Quality Care Center. Located in Boston, Massachusetts, Mass Gen is a nationally-ranked teaching hospital for Harvard Medical School, as well as a biomedical research facility. According to U.S. News & World Report, the hospital is among the highest in the country for 16 adult and five pediatric specialties.


This brand new Quality Care Center is staffed with four certified RLS healthcare providers:

John W. Winkelman (Director) MD, PhD
Kenneth C. Sassower, MD
Aleksander Videnovic, MD, MSc, FAAN, FAASM
Matt Bianchi, MD, PhD

To make an appointment with one of these physicians, contact Massachusetts General at 617-724-7426. All QCC contact information is also listed on our website.

The RLS Foundation offers a network of certified RLS Quality Care Centers across the country and in Europe. Centers are staffed by leading RLS specialists who provide expert care and specialized disease management. Through education, sharing of best practices and quality improvement projects, the Quality Care Center Network aims to improve the quality of healthcare for all people living with RLS.

These QCCs are renowned for outstanding performance in the field. To achieve certification, Centers undergo review by the RLS Foundation Scientific and Medical Advisory Board and must demonstrate a high level of expertise and experience treating the disease. These Centers:

1. Are recognized as centers providing care to RLS patients by RLS experts

2. Serve as information and referral resources for regional support groups and for healthcare providers who treat patients with RLS

3. Promote understanding of the patient and family role in quality care improvement through educational offerings and literature

4. Share information with other Centers to improve clinical best practices

5. Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

Looking to join the network? Here’s how to apply.

"Growing Pains" - Signs and Symptoms of RLS in Children

At the Foundation, we often receive calls from people with restless legs syndrome who first identified their symptoms as young children. Many of them say their children and grandchildren are also plagued with this devastating disease.

An estimated 1.5 million children and adolescents in the United States are afflicted by RLS, yet many are not diagnosed until adulthood (if at all), their symptoms being attributed to "growing pains." In fact, roughly 35 percent of RLS sufferers report experiencing symptoms prior to the age of 20. One in ten report RLS during the first decade of life.*

It wasn't until 2007 that groundbreaking research partially funded by the RLS Foundation confirmed what so many had been wondering - RLS runs in families. Dr. David Rye confirmed this genetic component by discovering the first gene variant that contributed substantially to the risk for RLS. Today, PubMed lists over 40 articles discussing genetic risk factors for RLS.

Unfortunately, RLS is still not widely recognized. Oftentimes, these children are misdiagnosed with attention deficit hyperactivity disorder (ADHD), labeled as the “problem child” in the classroom or otherwise wrongly punished for a disease that is misunderstood.

Children are among the most vulnerable in society, and those with RLS need a support system that caters to their needs. The Foundation has resources available on our website for both kids and their parents, including the brand new children's booklet, The Adventures of Patty Pillow. This publication, geared towards children between the ages of 7 and 12, teaches kids how to cope with RLS, while not taking away from who they are and what they love.

Additionally, the Foundation has just released its newest publication, the Children & RLS brochure. This brochure provides critical information to healthcare providers concerning the treatment of RLS in kids, and has experts weigh in on RLS and Periodic Limb Movement Disorder in children and adolescents. This and other publications can be access in the Members Only section of our website.

For more information about RLS and your child, call 512-366-9109 or email us. You are not alone!

*Walters AS, Hickey K, Maltzman J et al. A questionnaire study of 138 patients with restless legs syndrome: the ‘Night-Walkers’ survey. Neurology 1996;46:92-5.

*Montplaisir J, Boucher S, Poirier G, Lavigne G, Lapierre O, Lesperance P. Clinical, polysomnographic, and genetic characteristics of restless legs syndrome: a study of 133 patients diagnosed with new standard criteria. Mov Disord 1997;12:61-5.