Monday, September 15, 2014

FOR IMMEDIATE RELEASE: SHARE THE NEWS OF WILLIS-EKBOM DISEASE AWARENESS DAY 2014

FOR IMMEDIATE RELEASE:
SHARE THE NEWS OF WILLIS-EKBOM DISEASE AWARENESS DAY 2014

ROCHESTER, MINNESOTA - SEPTEMBER 15, 2014 - Willis-Ekbom Disease (WED) Awareness Day will be on Tuesday, September 23, 2014 to educate the public about Willis-Ekbom disease (also known as restless legs syndrome-RLS) – a common neurological disorder that affects the lives of millions. This day is an encouragement to continue to educate ourselves and work together as we take steps towards developing better treatments and a cure for WED/RLS.

“WED Awareness Day 2014 is an annual public awareness campaign to recognize the many accomplishments that have been made to increase awareness and education of the condition.  But, our work is not yet done.  The identification of new and better treatments is key to improving the quality of life for individuals living with WED/RLS.  In addition, new research leading to better treatment options will help people to lead full and productive lives,” noted Karla Dzienkowski, Executive Director of the Willis-Ekbom Disease Foundation.

Willis-Ekbom disease is a disruptive neurological disease characterized by an irresistible urge to move and by uncomfortable sensations in the legs or other limbs. The symptoms typically occur in the evening and worsen with rest. Thus, for many, WED/RLS severely disrupts sleep. Lack of awareness of this common disorder has caused many to suffer for years from misdiagnosis or a lack of diagnosis.

During WED Awareness Day and throughout the year, the nonprofit WED Foundation educates patients and healthcare providers and works to improve the future by funding research to find a cure. We have sought to improve the standard of care by developing a Quality Care Certification program that has recognized four centers in the United States and one in Europe.  Locally, support groups across the nation help increase awareness, hold educational meetings, and provide support to many people and families living with WED/RLS.  To learn more, visit the WED Foundation's website at www.willis-ekbom.org. 

Thursday, August 21, 2014

WED/RLS is different things to different people

Below are some common names used to describe WED/RLS symptoms.

Fidgety Legs
Jumpies
The Gotta Moves
Wiggles
Wheeby Geebees
Tortured Limbs
The Jitters
The Jerks
Night Thrashers
Heebee-Jeebees
Mom’s Leg Thing
The Fidgits
The Creepy Crawlies
Jumpy Legs
Jumpy Knees
Tickle Legs
The Crawlies
Edgy Legs
Bugs in the bones
Having butterflies in my legs
Jimmy Legs
Wiggle worms
The The Gotta Moves
Night Crawls
Day Crawls
Wretched limb syndrome
Anxious legs
Anxious feet
The twitches
The screechies
Eeky
Tingle legs
The Screechies
The Crinkles
Stretchy legs
Dead legs
Worm legs
Magic legs
Thing
That Icky twitchy leg
Jumpy life
Dancing legs
Crazy legs
Weak-knee-it is
Lead legs
The Scritchies
The leggy thing
Legs want to break dance
Twidgets
Racing legs
The kicks
Crazy Leg Thing
The Crawls
The jiggies
Atchie legs
The Shpilkes
The Stomps
The night time jitterbug
Happy Feet
Symphony feet
Ant legs
Jellow legs
The creepers
Legitis
The Willywumples
My hands and feet are nervous
Hot legs
Bugs crawling in my legs at night
Trains running up and down my legs
Tortured limbs

What other terms or phrases do you use to describe your WED/RLS symptoms?

Thursday, August 7, 2014

Will you help? Let's raise awareness for WED/RLS!

September 23 is WED/RLS Awareness Day. Let's raise awareness during the month of September. You can help raise awareness of Willis-Ekbom disease/restless legs syndrome (WED/RLS) by picking to do 3-4 items from the list below. Feel free to challenge yourself and others to check off more items on the list.
  1. Become a WED Foundation member (https://www.willis-ekbom.org/join-the-wed-foundation). 
  2. Get a friend to like us on Facebook (https://www.facebook.com/pages/Willis-Ekbom-Disease-Foundation). 
  3. Visit the blog (wedinfo@blogspot.com) and comment on a guest blogger post. 
  4. Write a blog post on WED/RLS on your own personal blog page. 
  5. Sign up for our monthly Efriends (https://www.willis-ekbom.org/member-login). 
  6. Take the new diagnostic tool survey on our website (http://www.willis-ekbom.org/wed-rls-diagnostic-tool). 
  7. Make a gift in honor or memory of someone special to the WED Foundation (https://www.willis-ekbom.org/donate-today). 
  8. Purchase a WED/RLS awareness pin (https://www.willis-ekbom.org/about-the-foundation/store). 
  9. Purchase a WED/RLS Wordle canvas print to display in your home or work place. 
  10. Contact your local newspaper’s health editor, and ask him/her to write a piece about Willis-Ekbom diease/restless legs syndrome (WED/RLS). 
  11. Share your WED/RLS story with your Facebook friends. 
  12. Change your Facebook Timeline Cover Photo to reflect WED/RLS. See Foundation’s Facebook page for a cover photo. 
  13. Write a letter to the editor to your local newspaper or TV station. 
  14. Tweet about the WED Foundation during Awareness Month (September). 
  15. Text your friends the WED Foundation’s website (www.willis-ekbom.org). 
  16. Join the discussion board (http://bb.rls.org/). 
  17. Send WED/RLS information, including old editions of NightWalkers, to your doctor’s office so other patients may benefit. 
  18. Be a guest blogger at www.wedinfo@blogspot.com by writing a personal story or creating an art image to share with the WED/RLS community. Submit your story to info@willis-ekbom.org and title the email Guest Blogger Request. 
  19. Request a free WED/RLS awareness bracelet and wear it the month of September. Email us at info@willis-ekbom.org and title the email Awareness Bracelet Request. 
  20. Offer old issues of your Nightwalkers to your local library for their magazine rack. 
  21. Create your own WED/RLS fundraiser on https://givemn.org/
  22. Email or mail us contact information of five (5) friends or family members to give them a free trial membership with the Foundation. Email us at info@willis-ekbom.org and title the email Trial Membership Requests. 
  23. Purchase and wear an apparel item from the WED Foundation to the local mall, park, hospital or community event. 
  24. Have your city put WED/RLS Awareness Day on the community calendar. 
  25. Design and create your own WED/RLS awareness t-shirt or tote bag to wear or carry around the month of September. 
  26. Ask your neighbors to leave their porch lights on overnight on September 23 to support the nightwalkers in your community. 
  27. Attend a WED/RLS support group meeting or reach out to a local volunteer. See upcoming meetings at http://willis-ekbom.org/connect-with-others/upcomingmeetings
  28. Ask your work place to hold a “wear jeans or slippers to work” on a Friday (or designated day) to collect donations from those that participate. 
  29. Hold a small fundraising event in your community to spread awareness of WED/RLS and raise money to support the Foundation’s mission. 
  30. Download, print and post WED/RLS posters in your community (schools, church, grocery stores, library, community centers and other billboard areas). 
  31. Call a friend or family member with WED/RLS to find out how they are doing. 
  32. Make and submit a WED/RLS awareness video. 
  33. Give the gift of WED Foundation Membership to family and friends. 
  34. Join in a free WED Foundation webinar. 
  35. Ask a friend or family member to join in on a foundation webinar. 
  36. Write a post on your Facebook account using the words WED/RLS Awareness day in your post on September 23rd. 
  37. Become a Support Group Leader or Contact. 
  38. Recommend to your WED/RLS healthcare provider that they become a member of our HCP Online Directory. 
  39. Host a, “Stomp out WED/RLS” jump rope party for school aged children to bring awareness of the disease in children and adolescents. 
  40. Ask local or national sports teams to announce or list on the jumbotron that today is WED/RLS Awareness Day