Monday, August 26, 2013

Awareness Day is September 23rd: Create Awareness for WED/RLS

We’re trying to put together some ideas to help raise awareness of WED/RLS. Here are a few:

Manicure or Pedicure for a Cure
Get a manicure or pedicure that uses the colors of our logo: blue and yellow. You may want to incorporate the swirls or some lettering to your nails. CURE WED! or CURE RLS!



Wear Slippers Work to Raise Awareness for WED/RLS!

Wear night slippers to work on a designated work day. Ask your company to collect donations for the WED Foundation when employees can wear bedroom slippers to work. Companies can charge a small fee or ask for donations. The collect donations can be sent to the Foundation to help support vital programs. 



Garage or Bake Sale for a Cure!

Get family, friends and co-workers to donate items to a local garage sale. All proceeds from your sale would be donated to the WED Foundation. It is a great way to clean out your closets and create awareness for WED/RLS.


Thursday, August 22, 2013

Awareness Day Activity: Shop to raise funds for the WED Foundation

I'm Jessica Roehm. I'm a 29 year old woman from the San Francisco Bay Area, plagued with WED/RLS. In the past year, my symptoms have gotten worse and it's lead me to reach out for help.

After my general practitioner told me she had never referred patients with this disease to neurology, I realized there is not enough known about WED/RLS. I did research on my own and discovered Willis-Ekbom Disease Foundation, which has validated those nights my legs want to keep moving and keep me awake.It also made me discover that I am actually not alone!

I became a stylist for Stella & Dot so that I can work from home, set my hours, learn about myself and help women find what they may not even know they want or need in their lives. I do this for my dachshund, Shelby, who survived a horrific cliff accident in 2012.




Stella & Dot allows women of all shapes and sizes to embrace their beauty so that they can start feeling better about themselves. Through my Stella & Dot business, I'm running a fundraiser to promote Willis-Ekbom disease, also known as restless legs syndrome or WED/RLS, awareness and to support the Willis-Ekbom Disease Foundation. WED/RLS affects me, my mother and grandmother had this condition.

Let's bring awareness together and you may enjoy all some really great jewelry and accessories from this link ==> www.stelladot.com/ts/qulr5.

I pledge to donate 20% of my commissions from all sales to Wilis-Ekbom Disease Foundation. If you have any questions, please contact me as your stylist, 650-455-6149 or jnroehm@me.com.


WED/RLS Awareness Day is September 23, 2013. Please share your awareness and fundraising efforts with the Foundation.

Monday, August 12, 2013

Guest Blogger: RLS Never Sleeps by Annmarie Lindon

RLS NEVER SLEEPS

I sit awake late at night
Thoughts are flying around my head
My body and mind are so exhausted
I only want to sleep in my bed

My legs have their own agenda
All different times, day and night
But you can bet your precious farm
My legs and I meet daily and fight

I always seem to lose the battle
My legs, the pain is too much for me
I try to bang, slap, and walk it off
But relief for me was not meant to be

Sometimes I think I’ve beaten it
The time is way past eight
But then the devil sneaks up on me
And shows me it’s never too late

I dream of the day I don’t have this
The fact that I can’t sleep at night
The pain that controls my arms and legs
The dream that a cure soon be in site

3-2000Annmarie Lindon 

About the blogger: I'm 46 and have been suffering with WED/RLS since I was 12 years old. Back then it was growing pains but I knew it was much more. It wasn't until I got married in 93 when a name was put to it for me. My world changed. I'm NOT CRAZY!!! Unfortunately it started with both legs and then moved to both arms. It is not just the "drive me crazy" feeling but the pain that goes along with it. I'm on numerous Rx for WED/RLS and insomnia. I pray one day soon there will be a cure or at least 1 pill that will work for me. Until then I stay up every night and write.

Saturday, August 3, 2013

Second Quality Care Center Announced!

To better serve its members, the Foundation will maintain a directory of healthcare providers who have expressed interest and/or knowledge in the treatment of WED/RLS by being certified as WED/RLS Quality Care Center provider. 

We are proud to announce our second certified WED/RLS Quality Care Center!

Appointment Scheduling Information:
Mayo Clinic Central Appointment Office
200 1st Street SW
Rochester, MN 55905
Phone number: (507) 538-3270
Website: www.mayoclinic.org/sleep-center-rsrt/appointments.html

Certified Healthcare Providers for Mayo Clinic include:
  • Bradley F. Boeve, M.D.
  • Suresh Kotagal, M.D.
  • Mithri Junna, M.D.
  • Melissa C. Lipford, M.D.
  • Michael H. Silber, M.B.Ch.B.
  • Erik K. St. Louis, M.D.
  • Maja Tippmann-Peikert, M.D.
You can search for other Quality Care Centers at http://www.willis-ekbom.org/quality-care-program/qcc-directory.

Friday, August 2, 2013

Youth Initiative Volunteers Needed

The Foundation is putting together a Parent Advisory Board to develop and implement a new program (Hearing Children's Voices) to address the needs of children and youth living with WED/RLS, their families and their community schools and healthcare providers. Interested in joining? Please email crowson@willis-ekbom.org for more information. Thank you in advance for your time.


First WED/RLS Quality Care Center Announced!

To better serve its members, the Foundation will maintain a directory of healthcare providers who have expressed interest and/or knowledge in the treatment of WED/RLS by being certified as WED/RLS Quality Care Center provider. 

We are proud to announce our first certified WED/RLS Quality Care Center!


The Johns Hopkins Center for Restless Legs Syndrome
5501 Hopkins Bayview Circle
Baltimore, MD 21224

Appointment Scheduling Information:
Contact: Robin Fishel
Email:  rfishel2@jhmi.edu
Phone number: 410-550-0574

Certified Healthcare Provider(s):
Christopher J Earley MB, BCh, PhD, FRCPI
Richard Allen, PhD

Want to know more about our Quality Care Centers. Visit http://www.willis-ebom.org/quality-care-program.

Thursday, August 1, 2013

New initiative to improve diagnosis and treatment of Willis-Ekbom disease (restless legs syndrome)

Rochester, Minn. – [August 1, 2013] – The WED/RLS Quality Care Center Program will establish a network of healthcare providers with expertise in diagnosis and disease management for people with Willis-Ekbom disease (restless legs syndrome, or WED/RLS), a chronic neurological disorder severely affecting about 3.9 percent of the population. This program is an initiative of the Willis-Ekbom Disease (WED) Foundation.

In July, the Foundation certified the Johns Hopkins University School of Medicine as the first member of the network, which is expected to include 25 providers worldwide by year-end.

About the Program

The WED/RLS Quality Care Center Program aims to:

  • Help patients and families locate specialists with WED/RLS expertise
  • Establish centers as regional resources for primary care providers
  • Promote understanding of the disease process and the patient’s role in care management through educational offerings, print materials, and connections with WED Foundation local support groups
  • Improve care over time through quality improvement projects


The program meets a vital need for a disease that is widely misunderstood and underdiagnosed, says WED Foundation Executive Director Georgianna Bell. “Every day, the WED Foundation hears from patients who need help finding a knowledgeable provider or adequate treatment. WED/RLS can be effectively managed over time, and our aim is to build a network of experts who will help providers everywhere meet this expectation. Nobody with this disease should suffer a reduced quality of life for lack of diagnosis or treatment.”

WED/RLS is a common neurologic disorder that causes an irresistible urge to move the legs, often accompanied by unusual or unpleasant sensations. Because symptoms commonly appear in the evenings, they can severely disrupt sleep and reduce quality of life.

To learn more, visit www.willis-ekbom.org.

# # #

About the WED Foundation

The WED Foundation is dedicated to improving the lives of men, women and children who live with Willis-Ekbom disease. Founded in 1989 in Rochester, Minn., the Foundation’s goals are to increase awareness, improve treatments, and through research, find a cure. The Foundation serves health care providers, researchers, over 5,000 members, and millions of individuals in the U.S. and Canada who live with WED/RLS. The WED Foundation Research Grant Program has awarded $1.4 million to fund medical research on WED/RLS causes and treatments. For more information, visit www.willis-ekbom.org.