Restless Legs Syndrome Foundation Blog

RLS Foundation Earns Coveted 4-Star Rating from Charity Navigator

Austin, Texas, Dec. 22, 2017 – The RLS Foundation’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.

Since 2002, using objective analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. In 2011, Charity Navigator added 17 metrics, focused on governance and ethical practices, as well as measures of openness, to its ratings methodology. These “Accountability & Transparency” metrics, which account for 50 percent of a charity’s overall rating, reveal which charities operate in accordance with industry best practices, and whether these organizations are open with their donors and stakeholders. In 2016, Charity Navigator enhanced its methodology to further substantiate the financial health of 4-star charities.

“The RLS Foundation’s exceptional 4-star rating sets it apart from its peers and demonstrates its trustworthiness to the public,” said Michael Thatcher, president and CEO of Charity Navigator. “Only a quarter of charities rated by Charity Navigator receive the distinction of our 4-star rating. This adds the RLS Foundation to a preeminent group of charities working to overcome our world’s most pressing challenges. Based on its 4-star rating, people can trust that their donations are going to a financially responsible and ethical charity when they decide to support the RLS Foundation.”

“We’re thrilled to achieve the 4-star rating from Charity Navigator,” said RLS Foundation Executive Director Karla Dzienkowski, RN, BSN. “This rating demonstrates our good governance and financial accountability, and assures our supporters that we are making wise use of their investment. Seventy six percent of the money donated to the RLS Foundation is used to fund research towards better treatments and a cure, to advocate for RLS victims, and to raise awareness about this very serious medical condition.”

The RLS Foundation’s rating and other information about charitable giving are available free of charge on www.charitynavigator.org. More detailed information is available to Charity Navigator site visitors who become registered users, another free service.

About the RLS Foundation

The RLS Foundation is dedicated to improving the lives of men, women and children who live with restless legs syndrome (RLS, also known as Willis-Ekbom disease). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and through research, find a cure for RLS. The Foundation serves healthcare providers, researchers, nearly 5,000 members and an estimated 7 million individuals in the United States who have RLS. The RLS Foundation has awarded over $1.6 million to fund medical research on RLS causes and treatments. For more information or to become a member, visit www.rls.org.

About Charity Navigator

Charity Navigator is the largest charity evaluator in America, and its website attracts more visitors than all other charity rating groups combined. The organization helps guide intelligent giving by evaluating the Financial Health and Accountability & Transparency of more than 8,000 charities. Charity Navigator accepts no advertising or donations from the organizations it evaluates, ensuring unbiased evaluations; nor does it charge the public for this trusted data. As a result, Charity Navigator, a 501(c)(3) public charity itself, depends on support from individuals, corporations and foundations that believe it provides a much-needed service to America's charitable givers.

New Member Joins RLS Foundation Board of Directors

We are pleased to welcome a new member to the RLS Foundation's Board of Directors, Steven McCann!

"Introducing Steve is my particular privilege, and the phrase that keeps coming to mind to describe him is the paradoxical ‘servant-leader,’" said Linda Secretan, RLS Foundation support group leader, fellow board member and head of the board's Governance and Nomination Committee. "Steve’s enthusiasm for whatever work lies before him hums like an undercurrent in his conversations. Now the RLS Foundation is the willing beneficiary of both his energy and professional experience."

Steve is a seasoned sales executive, specializing in new business development. Currently he is Director of Partnership Development at MECLABS Institute and Marketing Sherpa, and has been involved with Big Brothers/Big Sisters of America for eight years as both a Big Brother and as a member of the Board of Directors.

"I have been an early-onset 'patient,' experiencing RLS since childhood," Steve said. "And, as is common, it progressed with age. I am excited to be part of the RLS Foundation, [who provide support] in terms of education, awareness, action, and the path to a cure."

Steve was initially connected to the RLS Foundation ten years ago by our west Florida volunteer Ed Murfin, after calling him to find additional support for dealing with his RLS. According to Steve, Ed is "a great example of the giving, helping, supportive attitude displayed by this Foundation."

After staying in touch for a number of years, Ed then introduced Steve to the current RLS Foundation Executive Director, Karla Dzienkowski, RN, BSN. After seeing his passion for the cause and his leadership experience, Karla suggested that Steve consider getting involved with the organization's mission at a higher level - with the Board of Directors.

"I had no idea that helping him deal with his terrible RLS symptoms would result in him becoming a young business man on the Board of Directors of the RLS Foundation," Ed said. "Though I never met him personally, I recognized him as a brilliant man in the business world who was being caught in a strangle-hold by his RLS. I helped him win some battles and suffered with him through some lost battles, all over the telephone or email... Imagine my thrill when Linda Secretan informed me that she had personally nominated Steve as the newest member of the Board of Directors and credited me for his being there."

Steve hopes that his personal experiences with RLS can help bring additional insight to the board.

"[After] all those years of sleepless nights, I am most familiar with this condition and feel that I have at least my experience to offer someone else," Steve said. "I intend to share the awareness message, and use my passion on this subject to reach others and help the quality of life of today's sufferer to improve. With knowledge can come an improved life. I am an example of this. I look forward to involvement that makes a positive difference."

Welcome to the team, Steve!

Help Provide RLS Foundation Memberships to Those in Need

At the RLS Foundation, we hear from many individuals who have limited financial means and cannot afford the $35 to become an RLS Foundation member. Some are on a fixed income, have high medical bills, or simply fell on hard times. It could happen to any of us, and it is our policy to never turn anyone away.

To ensure that we can continue providing scholarship memberships to those in need, we unveiled our "Pay It Forward" initiative. This allows for donors or current members to "sponsor" an RLS Foundation membership for someone unable to afford it. Your generosity will give the recipient valuable information provided in our quarterly NightWalkers magazine, along with additional membership benefits and, most importantly, comfort in knowing they are a part of our caring RLS community.

The RLS Foundation is funded primarily by annual memberships and individual donations. There are many different ways you can give to the RLS Foundation, and lending a hand to a fellow RLS sufferer is a great way to "pay it forward" and let others know what we know - that you are not alone.

Happy holidays, everybody!

RLS: A Real Lousy Syndrome, Part 2

A Poem by Jim Healey

Two months ago, I wrote a poem

About my battle with RLS.

I emphasized my lost sleep,

But now that loss is much less.

Things have changed a lot since then,

At shows, I'm not standing in the back.

On airplanes now, I can stay in my seat,

And I sleep when I hit the sack.

I've read for years that alcohol's no good

For people with our affliction.

Could two drinks a day make any difference at all?

My answer was, "no," with conviction.

But I had to find out, so I gave up the booze.

I hoped this experiment would fail.

But I'm here to tell you, it's a rousing success,

My symptoms are on the pale.

My meds are the same with a bit lower dose,

But the pains are fewer and weaker.

I miss my Old Fashioneds, but I found a fake beer

That tastes okay and it's cheaper.

My wife lets me drive more than before,

'Cause now my leg's not her foe.

You might say I traded booze for snooze,

Wish I'd done it four decades ago!

Foundation-Funded RLS Study Hits the Ground Running

In May 2017, John Winkelman, MD, PhD, of Harvard Medical School was awarded a two-year RLS Foundation grant for $144,000 to produce a pilot study on the use of opioids to treat restless legs syndrome. His study, “Multi-center Longitudinal Pilot Observational Study of Efficacy and Tolerability of Long-term Treatment of Restless Legs Syndrome Using Opioids," aims to establish the long-term safety and effectiveness of opioids for managing RLS symptoms, leading to the development of a National RLS Opioid Registry.

In the age of augmentation, opioids have been a successful strategy in treating those with refractory RLS (RLS that is not responsive to other treatments). The work of RLS pioneers Sir Thomas Willis in 1672 and Karl-Axel Ekbom in 1945 supports opioids as a viable treatment option, yet modern clinical studies are limited. The current opioid crisis is also restricting many healthcare providers from prescribing these medications – a lifeline to many who are suffering with severe RLS. Dr. Winkelman's study hopes to bridge the gap in information among the medical community by gathering data on the efficacy and safety of opioids for the treatment of RLS.

"The survey instruments for the [study] were modified and improved based on valuable feedback from RLSF [volunteers], members of the RLSF, and clinicians at the Quality Care Centers," Dr. Winkelman said. "We aim to accurately answer questions about the efficacy and safety of opioid medications for the treatment of RLS, and in doing so, we are keeping with the RLSF’s mission to improve the lives of those living with RLS."

How it will work

Participants in Dr. Winkelman's study will do a phone interview with a researcher for approximately 45 minutes. These questions will prompt responses about RLS symptoms, past and current medications, dosages, and opioid side effects, as well as more sensitive information about psychiatric conditions and other opioid risk factors.

Afterwards, participants will complete an online survey which will cover medical history, sleep behavior, habits, recreational drug use, and mood. Every six months following the initial phone interview, participants will receive a follow-up online survey that will take about 30 minutes, covering a combination of follow-up questions from the phone interview and the online survey.

How to get involved

Enrollment is limited to:

1. Individuals with a diagnosis of RLS (confirmed by the Hening-Hopkins Telephone Interview at the start of the phone interview)
2. Who are taking an opioid medication for RLS (which may be confirmed by state prescription drug monitoring programs)
3. Have taken (or are currently taking) a dopamine agonist for RLS treatment

Dr. Winkelman and his team are recruiting participants from patients of RLS Quality Care Centers and through the RLS Foundation. If you are interested in participating in this groundbreaking study, contact Dr. Winkelman and his research team directly:

• Call: Julia Purks, 617-643-2082
• Email: RLSregistry@partners.org
• Visit: www.massgeneral.org/rls-registry

"I would like to thank the members of the Restless Legs Syndrome Foundation for their generosity and support," Winkelman said. "[This study] is important for the future of RLS treatment, and I am grateful for the opportunity to build it."

John W. Winkelman, MD, PhD, is a Professor of Psychiatry at Harvard Medical School and director of the RLS Quality Care Center at Massachusetts General Hospital. He has served on the RLS Foundation Medical Advisory Board (now the Scientific and Medical Advisory Board ) since 2000, and on the Executive Committee of the International Restless Legs Syndrome Study Group. He was also chair of the Treatment Guideline Committee for the treatment of RLS at American Academy of Neurology.

Dr. Winkelman’s research interests include sleep-related movement disorders, insomnia and parasomnias. He is a leading expert on RLS, has published several textbooks, and has authored over 100 articles in sleep medicine. Notably for RLS, he published seminal work on cardiovascular disease and on end-stage renal disease.

New Genes Discovered that Contribute to Risk of RLS

Last month, researchers reported the identification of thirteen new gene loci that increase the risk for developing restless legs syndrome. This is a major milestone in demonstrating the power of genomics and its capacity to locate genes responsible for certain diseases.

It has long been known that RLS runs in families. Parents with RLS often have children, or even grandchildren, that exhibit signs of restless legs. Many adults with RLS recall their parents experiencing RLS symptoms decades prior, before the disorder had a recognized name. However, discovering how and why this familial phenomenon occurs has been difficult.

To date, the most successful research method in searching for genes associated with RLS has been genome-wide association studies (GWAS). This strategy involves using a large pool of individuals -- divided into a group with RLS and a group without RLS -- and screening common variants in their DNA.

In 2007, a GWAS study in the Icelandic population, funded in part by the RLS Foundation grant to Dr. David Rye of Emory University, identified for the first time a gene variant on BTBD9 that was associated with the “risk” of developing RLS. Subsequent studies by Dr. Juliane Winkelmann of Technical University of Munich and others further broadened the number of genes that were potentially involved in the risk of developing RLS.

In this most recent study, "Identification of novel risk loci for restless legs syndrome in genome-wide association studies in individuals of European ancestry: a meta-analysis," researchers from many countries in Europe and North America combined three GWAS datasets, totaling 15,126 individuals with RLS and 95,725 individuals without RLS. The researchers then went to work on searching for genome-wide signals. To confirm their results, they used data from an additional 30,770 individuals with RLS and 286,913 individuals without RLS to ensure that their data could be replicated. And it could.

The study revealed strong evidence for 19 genes that contribute to the risk of RLS, 13 of which were new discoveries. Additional analyses also found:

• The strongest risk factor for RLS was confirmed as gene locus MEIS1.
• A strong association was observed near the CRBN gene locus.

While last month's study did not prove that these 19 gene variants cause RLS, it is certain to help future research better understand the molecular causes of the disease, ultimately leading to the development of new treatment options for this serious neurological condition.

Thank You from Our Executive Director

As we plan for the season of giving thanks and gathering with family and friends, I want to be the first to thank each of you for your loyal support to the RLS Foundation. Your gifts have allowed a once tiny organization of a committed group of volunteers to grow and become the voice of the RLS community for 25 years.

We value our relationship with you, and want you to know that the RLS Foundation is here when you need us. As a nonprofit organization, our priority is clear: to support and serve the RLS community. Through our network of resources, you can remain connected to people who care and can relate to your concerns.

• Our online Discussion Board and blog, as well as our social media outlets ( Facebook, Twitter, Instagram and others) provide instant connection to others.
• Our staff is here to help you with a listening ear and informational materials, and can help identify RLS providers in your community and at certified RLS Quality Care Centers.
• Our network of volunteers are there to support you via phone or email, and through comforting and informational support group meetings.

On November 28, we hope you will join us on #GivingTuesday, the global celebration of giving. Membership is the lifeblood of our organization, and allows for us to provide integral resources to everyone suffering from this often-misunderstood disease. Your $35 each year directly strengthens our programs, including sponsoring research, producing educational events and materials, maintaining support groups, and providing assistance online.

Considering membership but haven't taken action? Know someone that would benefit from membership? Want to give the gift of membership to someone in need? Take action so we can reach our goal of 25 NEW Foundation members by the end of #GivingTuesday!

Your support makes a real difference in the lives of individuals living with RLS and their families.

Sincerely,

Karla Dzienkowski, RN, BSN

Executive Director

Foundation Welcomes Third New Board Member in 2017

We are pleased to welcome a brand new member to the RLS Foundation's Board of Directors, Carla Rahn Phillips, PhD!

Dr. Phillips was born in Los Angeles, California. She earned her B.A. in History at nearby Pomona College in Claremont and her Master’s and Ph.D. degrees at New York University. She then joined the History Department at the University of Minnesota and taught there for more than 40 years, retiring in 2013 as the Union Pacific Professor in Comparative Early Modern History.

Her teaching and research have focused on Europe, with an emphasis on Spain and its overseas connections in the period from the late 15th to the late 18th centuries. Among her publications are The Struggle for the South Atlantic: The Armada of the Strait, 1581–84, editor and translator (London, 2016); The Treasure of the San José: Death at Sea in the War of the Spanish Succession (Baltimore, 2007); “Visualizing Imperium: The ‘Virgin of the Seafarers’ and Spain’s Self–Image in the Early Sixteenth Century,” Renaissance Quarterly, 58, No. 3 (Fall 2005): 815–856; "'The Life Blood of the Navy': Recruiting Sailors in Eighteenth–Century Spain," The Mariner's Mirror 87, No. 4 (November 2001): 420–445; "Time and Duration: A Model for the Economy of Early Modern Spain," American Historical Review 92 (June 1987): 531–62; and Six Galleons for the King of Spain: Imperial Defense in the Early Seventeenth Century (Baltimore, 1986).

In addition, Dr. Phillips has published three books and numerous articles with her husband, William D. Phillips, Jr., among them A Concise History of Spain (Cambridge, 2010, 2016); Spain's Golden Fleece: Wool Production and the Wool Trade from the Middle Ages to the Nineteenth (Baltimore, 1997); and The Worlds of Christopher Columbus (Cambridge, 1992).

"A distinguished academic and scholar of international stature, Dr. Phillips would be an asset to any organization," said Linda Secretan, RLS Foundation support group leader, fellow board member and head of the board's Governance and Nomination Committee. "We are pleased and honored that she has chosen to join our board. We hope to tap into her experience and acumen to make some RLS Foundation history of our own."

Now retired and living in central Texas, Dr. Phillips continues her research and writing, as well as being active in several professional organizations. Over the years she has held major offices in the American Historical Association (15,000 members), the Association for Spanish and Portuguese Historical Studies, and the Forum on European Expansion and Global Interaction, among others.

She was diagnosed with RLS more than 20 years ago, but the symptoms are currently controlled with medication. She is very pleased to join the board of the RLS Foundation in order to participate in its important work.

Welcome to the team, Dr. Phillips!

New Support Group Leader in Portland, OR

The Foundation is pleased to welcome Donna Rivers as the new support group leader in Portland, Oregon. Thank you, Donna, and welcome!

“My desire to become a support group leader for the RLS Foundation is directly related to my personal struggle with the disease. During my longstanding battle with RLS, I have concluded the public, as well as some physicians, lacks knowledge regarding RLS and periodic limb movement disorder (PLMD).

"Until I found the RLS Foundation, I felt very alone in my suffering. I am grateful beyond words that the Foundation is on the front lines of support, education and research. I recently retired from a 34-year career in nursing. I enjoy learning and helping people, as this has been an integral part of my life. I hope my volunteer role will benefit other RLS/PLMD sufferers in the greater Portland metro area.” – Donna Rivers

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

October 20, 2017

RLS Training for Doctors Would Be Cost Effective, Study Shows

By Kris Schanilec

An excerpt from the spring 2017 edition of NightWalkers, the Foundation's quarterly magazine

Recent research findings make the case for investment in a longterm infrastructure to train primary care providers in the United States to recognize and treat RLS. Currently, doctors do not receive such training in medical schools.

In 2016, the RLS Foundation awarded a research grant to William Padula, PhD, of Johns Hopkins Bloomberg School of Public Health, to conduct an economic study on the value of accurately diagnosing and treating RLS. Padula, in collaboration with Christopher J. Earley, MD, MB, BCh, PhD, FRCPI, at Johns Hopkins Medicine; and Charles E. Phelps, PhD, MBA, at the University of Rochester; concluded that training primary care providers to correctly diagnose RLS would be cost effective. They found that in 65 percent of cases, the cost of training is expected to be lower than costs related to patients’ medical care, as well as lost work and time.

Padula and Phelps will co-present their findings at the annual meeting of the International Society of Pharmacoeconomics and Outcomes Research (ISPOR) in May, and are preparing the results for publication in a medical journal.

“We hope that in addition to publishing these findings, headway can be made to incorporate training on RLS treatment into standard postgraduate medical curriculum for many of the primary and secondary medical disciplines,” says Padula. “This scientific evidence on value is sure to help.”

The study sheds light on a vexing problem: Since RLS is not covered in the medical school curriculum, patients who have RLS are commonly misdiagnosed by inexperienced or undertrained providers as having other chronic conditions with similar symptoms, such as Parkinson’s disease (PD), attention deficit hyperactivity disorder (ADHD) or sleep deprivation. Some evidence shows that the misdiagnosis and subsequent treatment for the wrong condition leads to worsening patient outcomes and high accumulated costs of care.

For example, a patient who is misdiagnosed with ADHD may take medications that actually worsen RLS symptoms, and subsequently be misdiagnosed with PD. The period of misdiagnosis commonly persists for years, taking a significant toll on sleep and quality of life.

The researchers collaborated on the design of a cost-effectiveness analysis to model scenarios of costly misdiagnoses leading to poor patient outcomes, as opposed to properly treating RLS. They applied their model using information from a comprehensive review of medical literature.

Padula’s economic analysis on the costs of RLS is the first of its kind in the United States and will support the Foundation’s efforts to expand provider education.

“Understanding the underlying factors – such as lack of provider education – that delay access to treatment and addressing them will ultimately improve patient outcomes,” says Karla Dzienkowski, RN, BSN, executive director of the RLS Foundation.

She adds, “Dr. Padula’s study underscores the economic impact of RLS and burden of disease for individuals living with RLS. It is our hope that this research provides RLS researchers valuable information to secure future funding from the National Institutes of Health, Department of Defense, and other sources.”

Want to subscribe to NightWalkers? Become a member today to receive this quarterly member publication, along with other member benefits!

Thank You, Jan!

After over two decades of service, Janice Schneider is retiring as the support group leader for Southwest Ohio. She dedicated countless hours to her support group and others seeking help, and her passion for providing support to those suffering was unparalleled.

Jan will be staying on with the Foundation as a volunteer contact, so she will be available to continue to provide support to those seeking help via phone or email. Thank you for your continued support, Jan!

Read below for a special farewell message from Jan:

I have been a facilitator for the SW Ohio RLS Support Group for over 21 years. The reason I was willing to help with a support group was that I care for people and what they are going through. I hope and pray that in some small way I may have made a difference in the lives of those I've had the opportunity to touch at the meetings or by phone. I know my life has been enriched by all I have interacted with.

The RLS Foundation has been great to work with, and I thank the Kettering Medical Center for providing a medical advisor and a meeting space for us these many years.

My hope is that the medical profession sees the seriousness of restless legs syndrome, and provides more training for doctors coming out of medical school. [I also hope] that funding will continue for research to bring a cure for such a debilitating disease. I look forward to keeping up with all that is going on through the NightWalkers newsletter, which I look forward to receiving each quarter.

Blessings,

Jan Schneider

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

Quinine Treatment for RLS or Leg Cramps is Associated with Increased Mortality

By Lynn Marie Trotti, MD, MSc

An excerpt from the Summer 2017 edition of NightWalkers, the Foundation's quarterly magazine

“Association Between Long-Term Quinine Exposure and All-Cause Mortality.” Fardet L, et al. JAMA, May 2017.

The Background:

Nocturnal leg cramps are common, affecting over one-third of adults over age 60 at least occasionally, and over half of adults over age 80. For many years, quinine was used for treatment of cramps, either as a prescription in pill form or through drinking tonic water for its high quinine content.

In 2006, the FDA recommended against the use of quinine for leg cramps because of the potential for serious side effects or death. Despite this warning, use of quinine for the treatment of leg cramps has not ceased.

The Research:

Researchers used a large healthcare database of primary care patients in the United Kingdom to evaluate quinine use and mortality across approximately 175,000 people from 1990 through 2015. Individuals who were prescribed a dose of at least 100 mg per day of quinine for at least one year were each compared to three people who were not prescribed quinine. Those who were prescribed quinine had either cramps (96 percent of the quinine-prescribed group) or restless legs syndrome (4 percent), so controls were chosen with these same diseases (96 percent had cramps and 4 percent had RLS).

People exposed to quinine were, on average, one year older than controls, and were prescribed an average quinine dose of 203 mg per day. There was a 24 percent increase in risk of dying during the study period in the group prescribed quinine. Considering only those people prescribed quinine for RLS, there was still a significant increase in mortality risk in those with a quinine prescription.

The Bottom Line:

Quinine pills are not recommended for the treatment of RLS or leg cramps. It is unclear whether daily use of tonic water, which generally contains less than 100 mg of quinine per liter, also increases mortality risk.

New Questions:

Although there are multiple proven treatments available for RLS, data is very limited on how best to treat nocturnal leg cramps. As quinine is to be avoided, what treatments are effective for nocturnal leg cramps?

Want to subscribe to NightWalkers? Become a member today to receive this quarterly member publication, along with other member benefits!

RLS Foundation Welcomes New Board Member

We are pleased to welcome a brand new member to the RLS Foundation's Board of Directors, Shalini Paruthi, MD! She is an energetic practitioner and scientist with a unique perspective on sleep medicine.

Dr. Paruthi practices in St. Louis, MO, where she sees patients of all ages. She has a particular interest in sleep disorders of childhood – obstructive sleep apnea, insomnias, narcolepsy, and – of course – restless legs syndrome. Not only do her patients benefit from her extensive study; she is a teacher as well – as an adjunct associate professor of internal medicine and pediatrics at Saint Louis University School of Medicine.

"We are grateful for the participation of Dr. Shalini Paruthi, and her willingness to share her most certainly unique, vastly informed and inquisitive point of view with the RLS Foundation as a member of the board," said Linda Secretan, RLS Foundation support group leader, fellow board member and head of the board's Governance and Nomination Committee.

Dr. Paruthi is board-certified in Sleep Medicine and Internal Medicine, and received her medical degree from The University of Missouri-Kansas City School of Medicine. She went on to complete her internal medicine residency and sleep fellowship at The University of Michigan.

Dr. Paruthi’s interest and energy extend to research pursuits as well, extending our understanding of sleep and its many disruptions and diseases. She is Co-Director of the Sleep Medicine and Research Center at St. Luke’s Hospital in St. Louis. She has contributed widely to activities of American Academy of Sleep Medicine (AASM) chairing sleep focused conferences, participating in task forces, serving on committees, including the Education Committee and national SLEEP meeting Program Committee. Currently she is on the editorial advisory board for Sleep Review: the Journal for Sleep Specialists.

Welcome to the team, Dr. Paruthi!

Thank You!

RLS Awareness Day 2017 was one of our most successful awareness campaigns yet. Hundreds of you donated, shared your RLS stories with us and your communities, and echoed to others that they are not alone. Not to mention that we made our $25K "Challenge for the Cure" match!

Some well-deserved thanks are in order for RLS Foundation member Susanne Campbell, who secured the RLS Foundation free ad space in the Chapman University Celebrates Opening Night program. Additionally, RLS Foundation volunteer contact M. Lynn McCracken was able to get a piece about RLS Awareness Day into her local newspaper, while volunteer Support Group Leader Susan Schlichting wrote a guest blog post about her experiences with SIBO and RLS. Countless others posted on social media (special shout out to Mary Stompe who posted a video about #MyRLS story) or took the initiative to discuss with loved ones the importance of spreading RLS awareness and how it affects quality of life.

In a follow-up survey, we asked you to tell us how you took action on RLS Awareness Day. Here are examples of some individuals that went above and beyond:

"[I] posted your [Awareness Day] message on my Facebook account. An old friend I'd not talked to in years message me. We discussed medications, non-medication solutions, and I pointed her to rls.org, the webinars and discussion boards." - Joanie E.

"I posted the RLS 25th Anniversary symbol as my Facebook profile picture, briefly described the condition and how it affects me and others, and provided a link to the rls.org site for more information. [I] also read my NightWalkers Summer 2017 issue from cover-to-cover, and plan to share it with friends who are interested in learning more per my Facebook post. Last but not least, I donated to the RLS Matching Challenge and plan to double the contribution via my workplace matching program." - Martin S.

I changed my profile picture on Facebook, shared [an RLS] PSA on Facebook, and subscribed to the [RLS Foundation's] YouTube channel. Thank you for all of the work you do. - Becky S.

Awareness leads to greater support from the medical community, increased RLS research, and the momentum we need to find a cure for RLS. Together, small actions to spread awareness strengthen our impact as a community. There's still so much work to be done, but you brought us closer to the momentum we need. On behalf of all of us at the RLS Foundation and the RLS community, we thank you!

RLS: A Real Lousy Syndrome

A Poem by Jim Healey

If you're a victim of RLS

I know you'll connect with this rhyme.

Some say the darn thing's a bother

I say the darn thing's a crime.

My mother had legs that misbehaved

She never knew what was wrong.

“It's like little men with knives,” she said

“Tormenting me all night long.”

At age 32, my little men moved in

And started taking their licks.

They had to be awfully small little men

My legs are the size of toothpicks.

The doctor said it's arthritis

That stuff can really be cruel.

I'm guessing he missed the RLS lecture

That day he played hookey from school.

I tried to fight it with aspirin

Even tried some DMSO.*

But over the years I've lost lots of sleep

I just couldn't conquer my foe.

In theaters I grab the aisle seat

In case I get an attack.

And when I do, I swear it's true

I'm the only one standing in back.

One day my wife, Brainy Lainey

Said, “Put this at the top of your list.

Your problem's not bones or muscles or joints,

You need a neurologist.”

The new doctor I saw

Said I don't have to guess.

You're in pretty good shape

But you've got RLS.

He prescribed some new meds,

I sleep better at night.

I’m a long way from cured

But I'm winning the fight.

I've been standing up for hours most of my life,

I'm always on my feet.

I stand a lot to watch TV

Or read or even eat.

My shoes that once were single A

Are now a wider C.

My height is only six feet now

Down from six feet three.

My wife won't let me drive too far,

She hates when my leg starts to flop.

She pictures me hitting the gas too hard

Or making us skid to a stop.

When my leg acts up, she'll pull off and park

Then I walk, but not very far.

I'll stroll a strip mall and window shop

While she sits locked in the car.

A doctor friend once wrote me a note

Telling the airlines my affliction.

We figured they'd give me the exit row

But it failed to win their conviction.

They decided I must be unfit

To handle the exit row work.

So now I try hard to get on board early

To capture that exit row perk.

If only I could walk around

But that seat belt sign is lit.

I'm a prisoner on this plane right now,

My cell is where I sit.

So I writhe and twist

And take off my shoe.

The pill isn't working

Now what do I do?

If I go back to the john, where I've been a few times

I could stand for a while in there.

But darn the luck, the guy on the aisle

Is now fast asleep in his chair.

In a perfect world, if I wanted to travel

I'd be rarin' to get up and go.

Because now there would be a new federal law

That permits me to fly SRO!

*Dimethyl sulfoxide

Ten Ways to Become an RLS Awareness Ambassador

On Saturday, September 23, the RLS Foundation will join communities across the globe to celebrate RLS Awareness Day 2017. Held on the birth date of Professor Karl-Axel Ekbom, the Swedish neurologist who first described restless legs syndrome in 1945, Awareness Day is an opportunity to share key information about RLS with your network.

Please join us by taking just one step in the following list – or through an activity of your own. Together, we can make a difference and help build a more supportive world for families affected by RLS!

1. Take a selfie or make a short video clip with your own RLS awareness message. Post it on Facebook, Twitter, YouTube or Instagram – and ask your kids, grandkids and friends to do the same! Use the hashtag #MyRLS so we can hear your stories!
   The first 10 people to post a selfie, tag us and use #MyRLS will receive a FREE T-shirt!
2. Write a letter to the editor of your local newspaper or TV station about your experience with RLS. RLS afflicts 7-8 percent of the global population, and your story will give a personal window into this often misunderstood disease!
   You can also be a guest blogger for the RLS Foundation – email us to learn more!
3. Subscribe to our YouTube channel and show your support! Share the videos with your local newspaper, radio and TV media to spread the word about #RLSAwarenessDay2017!
4. Whether an RLS Foundation T-shirt, an RLS magnet on your car, or a hand-written “RLS Awareness Day” sign, you can catch eyes and start conversations about RLS Awareness Day! Visit our shop for more ideas and to take advantage of a 25 percent discount!
5. Share copies of Nightwalkers at your local library, doctor’s office, place of worship or other community gathering place! Want to request a free copy? Send us an email and we'll send you one!
6. Ask a friend or family member to join you in watching an RLS Foundation webinar! Check out the free webinars available on our YouTube channel.
7. Make the RLS Awareness Day 2017 image your Facebook profile picture! Click our Facebook profile pic to make it your own!
8. Become an RLS Foundation volunteer! Learn more by visiting our website.
9. Give the gift of membership! Our "Pay It Forward" initiative helps us provide RLS Foundation scholarship memberships to individuals in financial need.
10. Tell us what you did for RLS Awareness Day!

Thank you to everyone who has participated in RLS Awareness Day activities so far - let's get creative and let's get going!

My SIBO Story

Do certain foods seem to trigger your RLS? Or, when you experience bloating or abdominal fullness, do these conditions seem to exacerbate your RLS? If so, read on.

I finally made the connection between my restless legs and many years of (undiagnosed) Irritable Bowel Syndrome (IBS). I heard from Caroline Chamales, the RLS Foundation support group leader in San Diego, that Dr. Leonard Weinstock, a gastroenterologist at Washington University in St. Louis, was collaborating with Dr. Arthur Walters, a well-known RLS expert, Professor of Neurology at Vanderbilt and an active member of the Foundation's Scientific and Medical Advisory Board, to study the relationship between a gut infection that causes IBS-like symptoms and RLS. I jumped at the chance to learn more.

I went to my local gastroenterologist and insisted that I get tested for a gastrointestinal infection, called SIBO, which stands for Small Intestine Bacterial Overgrowth. To get a better footing on the subject, my gastroenterologist (GI doctor) suggested that I read the book, A New IBS Solution by Dr Mark Pimentel, Director of the GI Motility Program at Cedars Sinai Hospital in Los Angeles. Dr. Pimentel has devoted his career to studying IBS and is responsible for developing a breath test that diagnoses bacterial overgrowth in the small intestine that causes distress.

In St. Louis, Dr. Weinstock’s practice actually includes an RLS Clinic where he treats patients with the two diagnoses. Because Dr. Weinstock’s clinic is in Missouri and I live in the vicinity of Cedars Sinai, I chose to get treatment locally.

I took the breath test, was diagnosed with SIBO and treated with an antibiotic used to treat IBS, travelers’ diarrhea and hepatic encephalopathy called Rifaximen. And, in what seemed like a miracle, into the second week after taking the full course of the antibiotic, my RLS improved significantly. My nighttime RLS disappeared!

However, a potential complication is that people who have been diagnosed with SIBO frequently relapse. After the bacteria is killed, there is a healing period that is required. Because this is still considered a gray area of medicine, there is no standard regimen that has been embraced yet by mainstream medical providers.

I wish that I could close with a happy ending. I too have suffered a relapse filled with sleepless nights, difficulty swallowing, reflux, food intolerances and leg pain which at times triggers a full-blown attack of RLS. The journey has been no walk in the park, but I do harbor the hope that there is a rainbow somewhere in my not-so-distant future.

During the six years that I have suffered from both SIBO and nightly RLS, I had been diagnosed with osteopenia and nutritional deficiencies including Vitamin B12, and my ferritin was on the borderline reading of 50. Some have postulated that the overgrowth of bacteria in the small intestine causes malabsorption of nutrients. The bacteria were literally eating my lunch!

One takeaway from my experience is that the Low FODMAP diet, developed by the Monash University in Australia, helped with my symptoms as well as with my RLS. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. In simpler terms, FODMAPs are carbohydrates (sugars) that are found in foods. However, not all carbohydrates are considered FODMAPs. Once diagnosed with IBS by your gastroenterologist, you can discuss if the FODMAP diet is an appropriate nutritional therapy for management of your IBS. Current research suggests the FODMAP diet reduces symptoms of IBS. A majority of individuals with IBS also have SIBO, a major contributing factor to the development of IBS.

If you have been diagnosed with IBS and think that you may have SIBO, seek the professional opinion of a gastroenterologist for further evaluation.

Susan is the RLS Foundation's support group leader in Southern California.

Foundation Funds Study on Use of Opioids for RLS

An excerpt from the Summer 2017 edition of NightWalkers, the Foundation's quarterly magazine

The RLS Foundation has awarded a $144,000 grant to John Winkelman, MD, PhD, of Harvard Medical School, for a pilot study on the use of opioids to treat RLS. The two-year project is part of broader research to establish the long-term safety and effectiveness of opioids for treating the disease.

“This opioid registry is long overdue. It is important to establish the long-term safety and effectiveness of opioid treatment in RLS in order to distinguish it from the current literature on opioids in chronic pain,” says Christopher J. Earley, MB, BCh, PhD, FRCPI, who is chair of the RLS Foundation Scientific and Medical Advisory Board.

In the study, Dr. Winkelman and his team will recruit 200 patients from across the US who are taking opioids for RLS. The team will collect data on opiate medication and dose, severity of RLS symptoms, opiate side effects, sleep quality and augmentation. The first two years of data collection, supported by the RLS Foundation grant, will establish the parameters for ongoing, long-term research and enable the team to apply for further funding for this work.

Opioid use to treat RLS has increased over the past decade as other drugs have fallen short of meeting the needs of patients. Notably, dopamine drugs, which initially may relieve RLS symptoms, are now known to make symptoms worse over time for many people – a side effect called augmentation.

For many RLS patients, opioids are a beneficial alternative. Existing studies show that taking them at low doses can bring dramatic relief of RLS symptoms with minimal side effects.

Information is lacking about the long-term effects of opioids, however. A primary aim of the new study is to “fill that vacuum with reliable data,” says Dr. Winkelman. “In the absence of information, we have hypotheses, hunches, speculation, prejudice… And in medicine, we want to identify reliable information and data to benefit patients. The more information we have about the use of these medications in RLS, the better we’ll be able to guide patients’ decisions about the risks and benefits.”

The research also aims to address concerns in the US about using opioids to treat long-term conditions like RLS. In the midst of the nationwide opioid crisis, providers who prescribe them are under increased scrutiny, and many states have stepped up regulation.

“The concern is that some states may be so aggressive in their control of opiates that they restrict access to opiates for people who genuinely need them and are using them appropriately,” says Dr. Winkelman.

By disseminating and publishing their study results, the researchers hope to provide information for policy makers to form reasoned, scientific decisions about the use of opioid medications for RLS.

For Dr. Winkelman, this current research continues his long involvement in the field of RLS, which he says began early in his sleep medicine career when he started seeing patients with the disorder.

“There was so little known about this, and so many people who had been wandering in the wilderness of medicine, bouncing from doctor to doctor without any recognition from the medical community. The level of awareness has really grown in 25 years, and treatment options have grown as well.”

“It’s been extremely gratifying to have participated in this area of medicine over the last 25 years – see it change and be part of that change – and be a resource for patients and say to them, ‘I don’t know everything about this, but I feel secure in giving you the best information that exists.’”

John W. Winkelman, MD, PhD, is an associate professor of psychiatry at Harvard Medical School and director of the RLS Quality Care Center at Massachusetts General Hospital. He has served on the RLS Foundation Medical Advisory Board (now the Scientific and Medical Advisory Board) since 2000, and on the Executive Committee of the International Restless Legs Syndrome Study Group. He is also chair of the Treatment Guideline Committee for the treatment of RLS at the American Academy of Neurology.

Dr. Winkelman’s research interests include sleep-related movement disorders, insomnia and parasomnias. He is a leading expert on RLS, has published several textbooks, and has authored over 100 articles in sleep medicine. Notably for RLS, he published seminal work on cardiovascular disease and on end-stage renal disease, and he was lead author on the American pivotal trial of pramipexole to treat RLS.

How to participate in the study

Recruitment for the study “Multicenter Longitudinal Pilot Observational Study of Efficacy and Tolerability of Long-Term Treatment of Restless Legs Syndrome Using Opioids” is expected to begin in late 2017. Participants will have an initial 30- to 60-minute phone interview with a clinical research team at Massachusetts General Hospital, after which they will provide information through surveys on a secure website hosted at Massachusetts General.

Information will be de-identified to protect privacy. Participants will receive an annual summary of their data, as well as a yearly newsletter summarizing all study data. If you are interested in participating in the study, watch for more information on the RLS Foundation website at www.rls.org.

Finding Hope

I’ve tried to describe emotional aspects of having severe or refractory RLS. The word “refractory” in medicine means “not treatable” or “resistant to treatment.” Those of us in this RLS category have horrible symptoms at any time of day OR night. The symptoms and pain will disturb any facet of daily living. RLS does not discriminate. I’ve had feelings of not “fitting in” in social settings, especially knowing that I could have an uncontrollable bout of restlessness. Or worse yet, my sheer terror of having an episode of RLS just when I have to be calm and quiet -- I’ve lied to get out of such situations. I feel very angry at being powerless over such an invasive illness. RLS is a monster that is all-consuming. I came to realize that I had lost the power of choice physically, and was close to losing the one most valuable of feelings: hope. Realizing that hope is a huge part of living happily, I aggressively sought help.

In one year, three neurologists and four more attempts at medication adjustments resulted in three visits to emergency rooms and two calls to “crises on-call” telephone services, as I was having horrible medication reactions. I was exhausting all avenues for relief from RLS insanity. There are several RLS Quality Care Centers and it seemed to make sense to contact one and hope for admission. There was one neurologist I wanted to contact as I had seen him years ago regarding a medication. Why see him now? I didn’t know, but it was significant. No, it was life-changing. My physician, it turns out, is very familiar with RLS and has treated refractory cases successfully. His knowledge and treatment skills are based on sound, demonstrated and practical RLS treatment protocols. And, he is a really great guy. Within two days after my first visit, I started my journey into wellness. That was three months ago.

Resignation is understandable. But, now I know that relief is possible. Basic things have changed in my life. It was just a month ago that I bought a book; A simple mystery novel written by an author that I loved to read when I could sit quietly, empty my mind, and enjoy fiction as fact without disturbances from my RLS. What a joy it was to go to a bookstore and actually feel like I had a purpose, a reason in being there! That was groundbreaking.

My RLS was an imposition on my wife. She would see me walk for hours during the night doing my “circle 8” in the kitchen, living room and dining room. And she felt it. She felt the pain of not going to movies or plays or concerts. Felt the pain of being uncertain about gatherings because “my legs hurt.” And she felt the pain of hopelessness, because that is what she saw at every failed attempt for a remedy. Two weeks ago we went to a movie that I would not have chosen because of content and appeal. I was able to sit through the movie, and was able to ask questions about it later sitting in our living room. Sitting. Quietly.

And now, there is the beauty of sleeping when I want to rather than reach the point of deathly exhaustion. I still have troublesome and unfortunate sleep behaviors learned over 25 years of illness that may not be corrected. I have already found the wonder of regular sleep versus desperation naps. A different world. So now, I’m positive I will be able to come close to experiencing a far better sense of being normal. It’s already started, and my accounts of health and really good rest are noticed by friends and family. I’m told that I look and sound different. Now, I again have hope. I have great hope that the rest of my life will be truly peaceful. I hope that at least one reader will try “just one more” physician or go to a recognized RLS Quality Care Center. There is a solution under some rock – don’t stop turning them over.

How to Manage Your Child's RLS in the Coming School Year

Restless legs syndrome (RLS) does not only affect adults. In the United States alone, RLS is believed to afflict an estimated 1.5 million children and adolescents.

Although most research has focused on adults, RLS symptoms often begin during childhood or adolescence. In fact, about 35 percent of patients report RLS onset prior to age 20, and one in ten report that the syndrome appeared during the first decade of life. Additionally, research has shown that RLS has a genetic component, which causes RLS to oftentimes run in families.

Like adults, children with RLS tend to seek relief from their discomfort by moving their legs — often by fidgeting, stretching, walking, running, rocking or changing position in bed. Parents or healthcare providers often mistakenly label the child’s discomfort as "growing pains." Unlike most adults with RLS, children with RLS often complain of sensations more during the day than at night. However, RLS still causes the quality and quantity of a child's sleep cycle to diminish. This sleep deprivation can result in moodiness, irritability, inattentiveness, fatigue or hyperactivity.

In the classroom setting, attempts to relieve the uncomfortable feelings of RLS may be interpreted as inattentiveness, hyperactivity or disruptive behavior. RLS, however, is a real medical condition that calls for proper evaluation, diagnosis and treatment. Here are some tips to ensure that your child has the resources he or she needs to manage their RLS, especially at school.

Young Children and Adolescents

1. Have an open dialogue among family members about your child's RLS

It is essential for your child to feel supported at home, especially when they are struggling with a disease that they may not understand. Educating your family and your child about RLS will help create a comforting and safe environment for them to discuss their symptoms. The Foundation has a number of resources to educate both parents and children about RLS.

Our newest children's publication, The Adventures of Patty Pillow, is a great tool for your child to learn how to monitor their symptoms, triggers and other patterns. There is a spread in this booklet that allows for your child to keep a "kid-friendly" journal of his or her sleeping patterns and to track symptoms.

2. Talk to your child's teacher

Make an appointment to speak with your child's teacher(s), school nurse and/or coach(es) about your child's RLS. By discussing this important aspect of your child's health, these individuals can help create a plan so he or she can stretch/stand during class when they need to. Applying ice or heating pads may also help your child during class while they are sitting at their desk. You can also give these educators Foundation handouts so that they can learn about this often misunderstood disease - they may have another student with RLS in the future!

3. Establish a routine

A solid bedtime routine will help your child fall asleep faster and for longer. Here are some good rules of thumb:

• Go to bed and wake up at the same time every day. Having a regular routine will make it easier for your child's body to shut off for sleep at night.
• Avoid large meals or snacks right before bed. Caffeine in soft drinks, energy drinks, and chocolate (chocolate milk, candy and ice cream) before bed will also make it difficult for your child to fall asleep. Note: Teach your child how to read labels for RLS triggers, like caffeine.
• No electronics before bed. Blue light from a computer, tablet or phone screen can make your child's body think it's time to wake up. Instead, encourage he or she to take a bath, read a book or do some other quiet activity to get their body ready for rest.
• Play! Getting outside in the sunshine and exercising every day will help your child have a healthy sleep-wake cycle.

Teens

Teens typically require about 9 hours of sleep per night. Staying up late doing homework can contribute to poor sleep quality and restlessness, and can have negative effects on waking life. Encouraging your teen to establish a routine will help them get a restorative night's sleep.

Additionally, see if your teen can schedule their physical education class (or something similar) around mid-day so that they can get a break from sitting at their desk. Alcohol and nicotine can also exacerbate RLS symptoms, so this is also important to discuss with your teen. Read our Teen Guide for more strategies on how your teen can cope with their RLS symptoms.

Want more information on RLS and your child? Email us and we will get you what you need!

Providing RLS Care in Southern Switzerland

Mauro Manconi, MD, PhD, a current member of the Foundation's Scientific and Medical Advisory Board, has devoted much of his career to sleep medicine. In 2016 he partnered with the RLS Foundation as director of the second European RLS Quality Care Center (QCC), the Sleep Center at the Neurocenter of Southern Switzerland.

"The fact that an international organization certified Sleep Center at the Neurocenter of Southern Switzerland is of great satisfaction to us," Manconi said. "It is an important recognition that comes at the end of a long period of clinical and research work by our team... This acknowledgment confirmed that we are on the right track and it further motivated us, but above all it explained to the general administration of our institute the importance of this disease and the need to face RLS with a competent and multidisciplinary team."

Manconi also teaches at the Master School of Medicine at Bern University, the Institute of Communication and Health at the Italian Swiss University of Lugano, as well as at the Professional University School of Italian Switzerland. His research focuses on sleep disorders, specifically sleep-related movement disorders like RLS and PLMS, and he currently serves on the Scientific Board of the European Restless Legs Syndrome Study Group. At the RLS Foundation, Manconi is an active member of the Medical Bulletin Committee.

"The RLS Foundation QCC in Lugano, Switzerland offers individuals with RLS living in Europe a centrally located clinic with access to experts who are specialists in the care and management of individuals with restless legs syndrome," RLS Foundation Executive Director Karla Dzienkowski, RN, BSN, said. "Finding a knowledgeable provider is an important first step leading to symptom control and improved quality of life."

At the Neurocenter of Southern Switzerland, RLS patients receive a complete diagnostic pathway that begins with clinical and laboratory assessments, using the most sophisticated neuroimaging and video-polysomnographic instrumental examinations when needed. This allows for the certified RLS healthcare providers to rule out secondary RLS or other diseases that enter differential diagnosis along with RLS. At the Sleep Center, each patient receives an individualized therapy, including the management of other possible internist, neurological or psychiatric comorbidity that are periodically discussed by a local multidisciplinary team.

"The Center is always updated on the latest treatment available, participating in clinical trials and research in order to offer a large spectrum of assistance to our patients," Manconi said.

You can find more information on the Sleep Center at the Neurocenter of Southern Switzerland below:

Sleep Center, Neurocenter of Southern Switzerland

Civic Hospital of Lugano

Via Tesserete 46

Lugano, Switzerland 6900

Phone: 0041 (0)91 811 6825

Certified Healthcare Providers:

• Mauro Manconi, MD, PhD (QCC Director)
• Sylvia Miano, MD, PhD
• Stephany Fulda, PhD
• Pietro-Luca Ratti, MD, PhD

What You Need to Know

Iron deficiency without anemia has been associated with increased fatigue, depression, cognitive impairment, decreased work capacity and restless legs syndrome (RLS). Prior to diagnosis, an RLS healthcare provider may check a patient's iron (ferritin) levels to see if they have low iron.

"Keeping iron levels mid-range (75mcg/L and above) correlates to RLS symptom improvement," RLS Foundation Executive Director Karla Dzienkowski, RN, BSN, said. "Every individual with RLS needs to know their ferritin level, as it is a key component in the management of RLS symptoms."

Iron is essential for all living cells in the body. It works with the oxygen in your body to produce energy for your cells. When an individual has low iron stores, the amount of iron going into the bone marrow increases. When someone is severely iron deficient, as much as 99 percent of the body's iron will go directly into bone marrow, effectively starving other organs, including the brain, of iron.

There are a number of ways for someone with RLS to ensure that they keep their iron stores up. Eating meat, fish and liver provide the most absorbable form of iron for the body. While leafy green vegetables also contain iron, it is not always broken down adequately by the human digestive tract. Thus, the same amount of iron in a vegetable may not deliver the same amount of iron as in meat or liver.

Additionally, many RLS sufferers turn to supplementation to assist with their iron intake. Iron pills should not be taken with food, milk, antacids, calcium supplements or medications used to treat acid reflux, as they drastically reduce iron's absorption into the body. Some individuals increase this absorption by taking their iron pills with either Vitamin C or orange juice. It is essential for someone with RLS to consult with their physician before taking any supplements or altering their current RLS treatment plan, as this helps ensure the proper monitoring of iron levels, as well as looking out for the development of iron overload known as hemochromatosis.

In severe cases, some individuals with RLS use intravenous iron infusions. Currently, there are five different formulations of IV iron available for use:

• iron dextran
• iron sucrose
• iron gluconate
• ferumoxytol
• ferric carboxymaltose

It is important to note that the low molecular iron formulations present a low risk for allergic reaction, and therefore IV iron usually only considered if iron pills fail to improve iron stores.

The Foundation has a number of publications available in the Member Portal that cover iron and RLS, including our brand new Medical Bulletin. Not a member but need information? Send us an email at info@rls.org and we'll get you what you need!

Board Member and Longtime Friend of the Foundation

Jacci Bainbridge, PharmD, FCCP, a current member of the Foundation's Board of Directors, has a long history with the RLS Foundation. Beginning in 2007, Dr. Bainbridge served on the BOD for eight years. After a two year hiatus, she returned to the board in 2017.

"I have a vested interest in educating our patients, physicians and the public on RLS and neurologic medications," Dr. Bainbridge said. "I chose to serve on the RLS Foundation Board in order to assist in filling a knowledge gap in education and research relating to RLS awareness and medication usage."

Dr. Bainbridge serves as a clinical pharmacy specialist at the Anschultz Outpatient Pavilion's Neurology Clinic, an extension of the Neurology Residency Teaching Program at The University of Colorado Denver. She is also a professor in the Department of Neurology at the university's School of Medicine, and teaches at the Skaggs School of Pharmacy and Pharmaceutical Sciences, where she is a three-time Professor of the Year (2010-2012).

"Jacci is a committed educator and researcher in the RLS field," Executive Director Karla Dzienkowski said. "She brings her knowledge as a PharmD to the board and fully supports the Foundation’s education and awareness outreach, as well as providing valuable insight on research proposals under funding consideration at the board level."

Dr. Bainbridge manages patients with neurologic disease states such as epilepsy, Parkinson disease, multiple sclerosis, migraine and restless legs syndrome. She is currently involved in research projects funded by the Colorado Department of Public Health & Environment using marijuana. In her recent past she has had projects funded by the NIH, spanning subjects such as epilepsy, multiple sclerosis and neuroprotection trials in Parkinson disease.

Click here to read an article from the Winter 2015 edition of NightWalkers that Dr. Bainbridge co-authored with Mark Buchfuhrer, MD, FRCP(C), FCCP, FAASM, where they examine the relationship between medical marijuana and RLS.