Awareness and Education

The RLS Foundation Surpasses Goals for the Year

Nearly 25 years ago, the Foundation began as a tiny group of dedicated individuals meeting around a kitchen table in Raleigh, North Carolina. We grew to become a bustling organization located in Austin, Texas, with an expansive network of nearly 5,000 dedicated members.

Since its inception, the Foundation has provided over $1.6 million in support of RLS research, and we are still the leading organization for science-based education and patient services for those suffering from RLS.

Just consider what we have accomplished over the past 12 months alone:

1. Certified five additional RLS Quality Care Centers

2. Reinvigorated our research grant program by committing to award up to eight new pilot grants totaling $200,000

3. Developed a teen guide and children’s booklet to help our youth manage the challenges of RLS

4. Created a multidisciplinary Scientific and Medical Advisory Board

5. Launched research into the economic impact of RLS and its treatment

6. Rolled out a far-reaching Year of Augmentation awareness and education program – distributing and promoting an augmentation white paper research summary to nearly 50,000 healthcare providers

The Foundation also created a support group leader "RLS and Augmentation" tool kit, and released our RLS and Augmentation video, which has already been watched by thousands.



The Foundation has also been active in educating the medical community this year by attending SLEEP, a joint meeting of the American Academy of Sleep Medicine and the Sleep Research Society, in Denver, Colorado. We were also present in November at the annual conference for the Society of Neuroscience in San Diego. Both events attract thousands of researchers and healthcare providers that are eager to learn more about RLS and other sleep disorders.


We are so proud of all we have accomplished this year on behalf of the RLS community, but we could not have done any of it without the generous donations given by both members and nonmembers alike. Together, we have hit incredible milestones - big achievements executed by a small staff and a network of dedicated volunteers.

To everyone who has helped us get to where we are, we thank you!

Promoting Awareness – One Gift Membership at a Time

By Barbara Faraone

When long-time RLS Foundation member Barbara Faraone sees the need for education, she takes action! In the past several years, Barbara has purchased over 25 RLS Foundation gift memberships for physicians, nurses, pharmacists, hospital administrators and others to promote education and awareness about RLS. At the RLS Foundation, we are extremely grateful to individuals like Barbara who use whatever creative means they have to raise awareness for RLS. Barbara, thank you for making a difference – you are truly an RLS hero!

I’m a 79-year-old grandmother who has suffered with restless legs since at least 18 years old, although I suffered from leg pains (or as the doctors used to say, “growing pains”) from a very young age. I remember going to high school and being so glad that classes were only 45 minutes long. I would always try to sit in the back of the room, as I was always moving about. I was often asked why I never sat still. I never really had an answer for people, but thought it was just me.

Even going to college, my place was always in the back of the room; it was just plain uncomfortable to sit, and I preferred to stand. Thus, standing in the back of the room was enjoyable for me.

I became a teacher of third grade, and that suited me just fine. I never sat at my desk. I was always about the room with my children, working on projects or just tutoring one-to-one, thus walking a lot. With age came marriage and two children. This, too, was always an active time for me. It was during this time that I began to notice that sleeping with covers over my legs was not good for me. The pressure of blankets just made my kicking in bed worse. I was never one to cuddle in bed, as the legs would not stay still. I did not know what to do to stop this kicking, and it was not welcome to my husband, as you can imagine.

As years followed, I found myself being awake for many nights and often going from bed to couch to floor. I tried sleeping with my back on the floor and legs up on the wall or the back of the sofa. I tried hot baths, warm milk, Bengay, soap under the mattress, and any other odd suggested thing to try, of which there were many. I must say that a scotch and water would often calm them during the evening, but it did not last through the night.

I soon learned to exist on three to four hours of sleep and sometimes an afternoon nap. I just figured it was something I had to live with. I might add that I had all the muscle and nerve tests done over a period of years, but nothing seemed to show up wrong.

Doctors were of no help until my general practitioner went to a lecture about RLS at the local hospital. When he came back from this, we started in on the approved medicines available at the time. That was some 20 years ago. Since then, I have tried them all in many combinations. They would seem to work, but within a short time I was right back to my old self of discomfort most of the night. When the discomfort turned to pain, I began the treatment of painkillers. Yes, they worked, but got to be an all-day thing. And oh my, what it did to my system and mind. This was awful. I had to come off them.

I went to an RLS meeting in San Antonio and met the folks there. With their help, I made contact with a specialist at an institution that is now a certified RLS Quality Care Center. I call him my “savior,” as with his help and methadone, I do sleep, and my life is somewhat normal – or what I think of as normal. My legs are not really still during the day, but my friends have gotten used to me always moving. Thank goodness for friends.

My legs hurt most of the day, but during the night they are quiet enough that wherever I fall asleep, I sleep – whether it be in bed or on the couch.

Now, I have asked for years, what can I do for others who have RLS? Yes, I can contribute to the RLS Foundation, and it does help, especially in research. But I feel that I need to do something more to help educate medical providers.

So … I have been buying RLS Foundation memberships for all the doctors I meet in the hopes they will read NightWalkers and maybe learn something. Maybe they will believe what I say to them.

For example, I found a local hospital was advertising that they treated RLS. I went to see the doctor, only to find out he knew nothing of RLS. In fact, he called my druggist, as he thought I was addicted and needed help, and had no idea the uses for methadone. My druggist, who has a subscription to NightWalkers, gave him a 15-minute lecture as to the uses of methadone. I had the RLS Foundation send the doctor and hospital administrator a gift membership with information about RLS and a copy of NightWalkers.

I think my count of current gift memberships is up to something like 12 doctors and hospital administrators, and then I add friends or nurses or whomever needs an education about RLS. Has it made a difference? I don’t know, but I do know they are getting the correct information, and this can only help in the future.

An excerpt from the Summer 2016 edition of NightWalkers, the Foundation's quarterly magazine. Become a member today to receive this and other member benefits!

Tips for Extended Journeys

Strategies to Try for the Long Haul

Sitting for long periods of time can exacerbate RLS symptoms, especially when traveling by plane or car. If you know that you are going to be traveling with little space or time to stretch your legs, try some of these helpful tips:

Many RLS sufferers also avoid any triggers that may exacerbate their symptoms, like caffeine or alcohol. For more information on lifestyle choices that can help with your RLS symptoms, visit our website.

If you are driving, try to make stops to stretch your legs and walk around. When flying, it's always good to let the flight attendant know about your RLS, and ask if you can stand in certain areas without disturbing others during the journey. Booking seats in first class or emergency exit rows will also typically provide more leg room. Want to request a special accommodations card? The Foundation has a card available to share with flight attendants, drivers, healthcare providers, or others that may need additional information about your RLS. Become a member today to receive this and many other member benefits!

For additional strategies to try, check out this Buzzfeed article. Have safe and happy holiday travels, everybody!

You Are Not Alone

An Online Community Available 24/7

With the stress that the holidays can bring, it's a comfort to know that you are not alone in your struggles with RLS. The RLS Foundation's discussion board provides an avenue for individuals to post anonymously about their symptoms, treatments and other coping strategies. It is a supportive, hopeful environment for those who are looking to share their RLS stories with others who know exactly what they're going through.

The discussion board is run by five Foundation volunteers who serve as moderators. Topic areas currently include:

Physical Treatments
Non-drug therapies (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc.

Non-prescription Medicines, Supplements, Diet
Substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances.

Prescription Medications
Prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Topic of the Year: Augmentation
The topic of the year 2015 for the RLS Foundation is Augmentation. Use this forum to discuss any issues associated with Augmentation

Special Populations: Pediatric, Pregnancy, Secondary, etc.
RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. RLS in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.

Help for Relationships
Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?

General Topics
For everything and anything else not covered in the other RLS/WED sections.

Everything Else... Just No RLS!
It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.

To get started, learn more about the simple, free registration here. Questions or concerns? Contact the discussion board moderators at rlsfmods@rlsgroups.org.

Remember posts and information on the discussion board are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

Helpful Links for RLS Sufferers who Want to Learn More

Below is a presentation from the Foundation's 2016 educational webinar series, "Coping with RLS and What Sleep Deprivation Does to You." This webinar is presented by Dr. Jeffery Durmer, CMO of FusionHealth and member of the RLS Foundation Scientific and Medical Advisory Board. Visit www.rls.org for more information about our webinar series and other Foundation programs!



Additionally, this Buzzfeed article has some great infographics about tips for getting a good night's sleep!

Important Tips to Help with Your Sleep Cycle

For RLS sufferers, it is oftentimes nearly impossible to fall and stay asleep. Many have reported to the Foundation that they get as little as 2-4 hours of sleep per night. When the recommended amount of sleep is 7-9 hours each night, such little sleep can have debilitating effects on waking life.

However, it is recommended for those with RLS to get at least 30 minutes of exercise a day, as regular exercise can significantly improve and stabilize the sleep cycle. Studies from the National Sleep Foundation have continuously shown us that:

1. Exercise reduces stress and tires us out, allowing us to have a longer and better quality sleep
2. Sleep disorders like insomnia, sleep apnea, restless legs syndrome, and narcolepsy cost millions in medical costs and disrupt work and social lives
3. Those that exercise report getting a better quality of sleep than those who do not, and are less likely to have sleep issues

Exercise in the early hours of the morning or afternoon can have a positive effect on the natural circadian rhythm, or "sleep-wake cycle." Exercise raises the body's temperature for roughly four to five hours before gradually falling, thus helping one feel sleepy in the evening around bedtime. However, it is important to note that especially for RLS sufferers, rigorous exercise before bed should be avoided, since it can stimulate the brain and prevent one from falling asleep.

Meditation, yoga or light stretching are great options for easing RLS symptoms before bed, as they can help settle both the mind and body. Additionally, the Foundation's Sleep Diary is a great resources to help find sleep cycle patterns and potential RLS triggers.

Other suggestions for getting a good night's sleep include avoiding technology before bed, sticking to a consistent schedule and cultivating a relaxing evening ritual for yourself. Remember to refrain from any activity that your doctor has specifically told you to avoid. Read more about healthy lifestyle habits for RLS sufferers on our website.

Check out the original article about sleep and exercise and its great infographics at CapeCod.com.

Both Conditions Have Serious Consequences on Sleep Cycles

Like restless legs syndrome, migraines can be horribly debilitating. According to the Mayo Clinic , "a migraine can cause severe throbbing pain or a pulsing sensation, usually on just one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound."

In fact, two-thirds of individuals that participated in the Migraine in America 2016 survey , reported that their symptoms lasted five days or more. That's more than five days of excruciating pain, sometimes enough to be disabling.

To make matters worse, one in six reported that they also experience restless legs syndrome during a migraine attack. These are two serious conditions that interfere with sleep, potentially resulting in a decreased quality of life.

In fact, 66 percent of survey respondents said that lack of sleep could bring on a migraine. The irony is that migraines make it nearly impossible to fall into a restful sleep, yet sleep is one of the best tactics at soothing a migraine.

Read more about migraines and their adverse affects on various aspects of life in Reader's Digest.

Three Individuals Harness Social Media to Have Their Voices Heard

For RLS Awareness Day 2016, we at the Foundation were floored by the tremendous force of advocacy shown by our RLS family, especially through social media. For one of our Ten Ways to Spread RLS Awareness , we encouraged everyone to take to social media, change their profile pictures to our Awareness Day image and to tag the Foundation. The following individuals went above and beyond the call of duty - cheers to our winners!

Erin (Twitter)

Erin took to Twitter to retweet nearly all of our Awareness Day messages and get the word out. Go Erin!

"RLS Awareness matters and means so much to me for educating others! I've had it since I was at least 9 years old, and thought it was just something weird with me until I'd heard my mom talk of her dad's restless legs syndrome when I was a teen... I was amazed to hear her describe partially what I'd thought I was alone in. There [are] too many things that too many dismiss to be 'all in one's head' and RLS should NOT be one of those!"

Renee (Facebook)

Renee was a true RLS awareness advocate - posting this message over a month before RLS Awareness Day 2016, and urging others to educate themselves about this little known yet devastating disease:

"For the next 6 weeks my Profile Photo will be set to bring awareness to Restless Legs Syndrome (RLS). Many of you may not know that I (and my mom) suffer greatly from this terrible disease. While most would consider this not a life threatening disease...I can tell you first hand that IT IS life altering.

"There are countless nights of not sleeping because my legs will not stop moving (even with medications), or have a creepy crawling feeling, they jerk to the point of knocking my husband out of bed or forcing me to get up and walk around the house in the middle of the night. During the day my legs are always moving, always wiggling, or always jumping...to the point of embarrassment at times. The medications available for RLS unfortunately come with side effects that are not pleasant...and I know them all too well.

"PLEASE join me in raising awareness for RLS by:

#1 Liking my profile photo (it will also enter me into a contest to win a prize)
#2 By please take the time to read about it and understand it.
#3 If someone you know has RLS...please pray for them, encourage them and support them.

#RLSAwarnessDay2016 #Cure4RLS #YouAreNotAlone"

RLS Advocacy Award: Gary (Facebook)

Gary used Facebook to reveal to his network that he had been struggling with RLS since 2011, something that he had been desperately trying to hide. This year for RLS Awareness Day, Gary found the bravery to overcome his insecurities and open up.

"RLS Awareness Day matters to me because it's important to put a face and life story to this condition, that is often dismissed as 'not real'. I was diagnosed while being a full-time graduate student, studying to become a higher education academic advisor; this lifestyle requires a lot of reading, sitting, and being still from the waist down! My husband is great with assisting me with RLS pains via deep tissue massage and adapting his life around me. I want to raise awareness by 'coming out' about this aspect of my life in hopes to inspire others to take steps with getting evaluated for this medical condition; to encourage the general public about this condition; and to encourage medical professionals to take RLS more seriously in their practice."

Insufficient Sleep Cited as Public Health Problem

According to the Centers for Disease Control and Prevention (CDC), more than one third of adults in the United States fail to get a sufficient amount of sleep on a regular basis. In fact, many of these people are actually suffering from sleep disorders.

A sleep disorder is defined by any change in the way you normally sleep. Some of the more common examples include insomnia, sleep apnea, narcolepsy and restless legs syndrome (RLS) .

Symptoms of a sleep disorder involve irritability upon awakening and problems concentrating, and can lead to an overall decreased quality of life. Specifically, restless legs syndrome can prevent falling and staying asleep, resulting in unrefreshed sleep cycles and serious daytime fatigue.

Read the full article from Oklahoma Magazine here .

We want to give a HUGE shout-out to YOU, our incredible members, for your ongoing support of the Restless Legs Syndrome Foundation! Thanks to your loyalty and generosity, we are nearly 4,500 members strong and growing every day! 

If you're not sure you've renewed yet for our 2017 fiscal year (starting October 1st), check your membership "expiration date" that is now printed on the back cover of NightWalkers, right above your name and address. If it says "9/30/2016" on your Summer 2016 issue and you haven't yet paid your renewal dues by mail or through our website in the past 30 days, your membership may lapse as of October 1st ... disrupting your NightWalkers subscription as well. 

To make sure you won't lose your exclusive RLSF member benefits -- including 24/7 online access to publications, NightWalkers archive, educational webinars & more -- and to continue receiving NightWalkers, our acclaimed quarterly magazine ... please RENEW YOUR MEMBERSHIP TODAY! Thank you. 

If you have any questions about your RLSF membership, please contact Faith at faith@rls.org.

Top 10 Ways to Celebrate RLS Awareness Day:

1. Change your Facebook picture to our ‘RLS Awareness Day’ image (see RLS Foundation Facebook page) and tag us! You will be entered to win an RLS T-shirt and goodie bag! Win a Bravelet with the MOST LIKES on your post. 
2. Write a letter to the editor about your experience with RLS and send it to your local newspaper, TV station, or send it to us to post on our blog.
3. Tell your RLS story in video, photo or write a poem using the hashtags #RLSAwarenessDay2016 on Facebook, Twitter, Instagram or YouTube.
4. Order an RLS Bravelet for you or someone you care for and support! A portion of each Bravelet sold in support of RLS is donated to the RLSF! 
5. Become a Support Group Leader! Visit the volunteer page on our website or email Chiara at chiara@RLS.org for more information.
6. Everybody knows somebody with RLS. Download our postcard and send to four of your friends telling them about RLS Awareness Day, September 23, 2016 … the day the RLS community stands together with hope for a cure!
7. Download the RLS Quick Guide and share it in your community. Send it in emails. Post it at schools, places of worship, grocery stores, libraries, community centers and other public billboards. Bring it with you to appointments and leave copies in doctor's waiting areas – GET THE WORD OUT … YOU ARE NOT ALONE!
8. Gift or be gifted an RLS Foundation membership!  Give the gift of membership to a friend or family member (a $35 value). Or ask that a membership, or donation, to the Foundation be gifted to you for a special occasion, like your birthday! Membership includes our quarterly magazine, NightWalkers and access to the 'Members Only' section of our NEW website, where you can download any publication, access archived editions of NightWalkers and educational webinar archives.
   
9. Kids and teens have RLS too. Ask your school or sports league to announce RLS Awareness Day in morning announcements or during half-time! Be sure to share the RLS Teen Guide or Children's Booklet with your school nurse.
10. Purchase an RLS Awareness Ribbon magnet for your bumper.

The Link Between Sleep Disorders and Cardiovascular Health

On Sept. 19, the American Heart Association released a scientific statement confirming that sleep disorders, like obstructive sleep apnea and insomnia, are associated with negative cardiovascular health.

The American Academy of Sleep Medicine and the Sleep Research Society recommend that adults get in at least seven hours of sleep every night. However, this is rarely the case. In fact, according to the National Heart, Lung and Blood Institute, roughly 50 - 70 million adults in the U.S. each year report insufficient sleep or suffer from a sleep disorder.

With these new findings in mind, it was suggested that the AHA focus on sleep behavior through a public health campaign concerning proper sleep habits, as well as educating clinicians on how to screen for sleep disorders. Additionally, it was recommended that the impact of other sleep disorders, like restless legs syndrome and periodic limb movement , be tested for their relation with cardiometabolic risk.

To read more about the AHA's statement, check out this article featured on Cardiovascular Business.

Zibby and Faith

For the last two years, the Foundation has had the privilege of working with two exceptional employees - Faith and Zibby! Read more about these members of our RLS Foundation family below.

Meet Zibby

Every organization has one individual with a vast set of experiences that makes them a “jack of all trades.” At the Foundation, Zibby Crawford, the Foundation’s Marketing and Communications Coordinator is this individual. Zibby covers many areas of responsibility, from planning and coordinating the RLS Foundation's presence at meetings and conferences to compiling our eFriends mailing and managing our technological upgrades … It’s a good thing she is the ultimate multi-tasker! Her thirty years of marketing experience has enhanced our outreach.

Before the Foundation, Zibby worked in the high tech industry but fell in love with the nonprofit sector when she served as Board President for the National Charity League, Capital of Texas Chapter. Zibby's warm, bubbly and outgoing personality make her a joy to work with. She is always ready to teach a new skill or lend a hand. She has raised four kids, is waiting patiently on grandkids, but until then has a chihuahua rescue dog, Daisy.

Zibby’s motto is “Spread joy!” and she carries that spirit with her each and every day.

Meet Faith


When calls come in to the Foundation with questions, concerns or requests, they are answered with a positive, friendly voice ready to help. Faith Duncan is usually the first to greet callers, ready to help with any and all issues. Many times it's as simple as helping members log on to the Members Only section of our website. But, Faith has fielded any number of calls ranging from despair about this often debilitating disease, to requests from volunteers wanting to share knowledge with others in their community.

Faith put aside a career as an engineer to be a stay at home mom for many years. She became an active member of a non-profit where she served on the Board of Directors at the National Charity League, Inc., Capital of Texas Chapter, a mother-daughter service organization. Now, with her youngest in college, Faith has taken on her position as Member Services Coordinator and tackled some difficult software and processes with her very analytical, engineering approach and problem-solving abilities!

We are very fortunate to have her very sharp mind as well as her compassionate spirit - Faith has made such a difference here at the Foundation. We wish her a Happy Birthday this month, and hope you have the opportunity to experience her uplifting, positive attitude in the future ... you are not alone!

New Warnings and Dosing Information

New warnings and dosing information have been added to Requip (ropinorole), a medication used to treat RLS and Parkinson’s disease. The makers of Requip, GlaxoSmithKline, implemented FDA approved changes in the packet insert which include updated dosage and warning information. The update indicates healthcare practitioners and patients to taper off of Requip slowly to prevent neuroleptic malignant syndrome, a potentially serious adverse reaction. Neuroleptic malignant syndrome symptoms include high fever, muscular rigidity, and autonomic dysfunction.

In the event of discontinuing Requip or augmentation, this update reflects important precautions in gradual reduction of dosage. For a highlight of prescribing information, click here.

Speak with your healthcare provider or pharmacist if you have questions regarding your medication. Do not make changes to your medication without the advise of your physician.

A Guide to Navigating The RLS Foundation's Support Group Network

One of the most common questions we get at the Foundation is, "Where can I find support in my area?"

Across the U.S. and Canada, the RLS Foundation has a network of more than 75 individuals that serve as support volunteers for those suffering from RLS. Support group leaders organize meetings in their community to provide a safe haven for RLS sufferers to come together and share their stories, discuss coping strategies and learn about the latest treatments and information.

If there isn't a support group in your area, you can check to see if there is a contact nearby. Contacts are former group leaders who are available to offer support by phone or email to those in their area that are seeking RLS information, resources and support. They do not offer meetings but can assist in finding help where you live.

Another vital volunteer role with the RLS Foundation is our network of moderators who assist in managing the Foundation's discussion board. They are the virtual extension of our network that facilitates discussion and support regardless of your location or the time of day.

Check out the images below for a listing of our RLS Foundation volunteer family! You can also search for a support group or contact near you on our website.











We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

1. Learn more about the role by viewing the support group leader description.  
2. Submit an application! 
3. The Foundation will send references a brief questionnaire.
4. Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
5. You then plan your first meeting with the support from the Foundation!

Please send your completed application to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Or email Chiara@rls.org with your application form.

Our volunteer network is brimming with the enthusiasm of dedicated individuals - They continue to help The Foundation spread awareness and provide support to those facing RLS. Attend a support group meeting in your area or start one yourself! We want you to be a part of our team!

Who We Are and What We Do

In 2017, the RLS Foundation will celebrate its 25th birthday!

This year alone, we have certified three Quality Care Centers, created a multidisciplinary Scientific and Medical Advisory Board, developed an RLS Children's Booklet (copies available soon!), undergone a massive website redesign (to be unveiled next month!), and reinvigorated our research grant program that awards up to eight new pilot grants totaling $200,000. And it's barely August!

We invite you to join us!

Our community is growing... learn how the Foundation can help you find the medical and social support you may need. After all, we are here to serve you!

Meet Karla Dzienkowski, RN, BSN:

Executive Director

In January 2014, Karla accepted the position of executive director. In two and a half short years she has made a huge impact on this organization.

Karla first learned about RLS in her dual roles as a mother and registered nurse when her daughter, then 11 1/2 years old, began to experience symptoms that doctors could not explain. Karla crossed the country looking for answers before finally finding a knowledgeable doctor, and shortly after, the RLS Foundation.

Eager for answers, Karla joined the Foundation’s Board of Directors in 2004 and served through 2009. As a board member, she encouraged pediatric RLS research, along with programs to increase awareness and education of RLS in the medical and school communities. Karla believes that much work has yet to be done in disseminating information about RLS to the public and the medical community, and that much more research into its cause and treatment is needed. Karla drives the mission of the Foundation with her leadership, and she is passionate about promoting research for better treatments and a cure.

Karla explains “The RLS Foundation serves as a beacon of hope, help and support for individuals and their families who deal with the daily impact that RLS has on their life. I want to thank each of our members for supporting the Foundation because you gave me and my family a life-line when we desperately needed one. With the help of the Foundation we were able to find the care my daughter needed and get back to living life.”

Karla has vast experience working with non-profits, including active participation for many years in Girl Scouts, Austin Children's Museum and three years serving on the Board of Directors for National Charity League, Inc., with one year as board president of the Capital of Texas Chapter. Karla, her husband, John, and their two daughters have recently welcomed a new Alaskan Klee-Kai puppy named Arrow into the family.

Karla is truly the Foundation’s #1 cheerleader. She always responds to difficult inquiries that come to the Foundation with genuine empathy, support and deep knowledge of RLS, drawn from her roles both as a family member impacted by the disease and as a nurse with over 30 years of medical knowledge and experience.

We recently received this note to Karla from someone with whom she was corresponding: “I also thank you for the empathetic warmth of your email. As you know, people in my situation feel very stressed and suffer from social isolation. It means a lot to feel contact with someone who understands. I think your organization is very blessed to have someone like you working in your position. I hope they appreciate you!”

Do we appreciate Karla? … Beyond measure!

• Recognition of RLS Quality Care Centers as leaders in the field and as specialty clinics for patients who are traveling or in search of knowledgeable healthcare providers
• Availability of RLS Quality Care Center staff as resources for referring primary care providers
• Patient educational offerings, print materials and connection with RLS Foundation local support groups