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“The Patient Odyssey survey results mirror what I and many of my colleagues are already seeing in our practices – that patients can struggle for many years to identify the cause of their symptoms and to arrive at an appropriate disease management plan”

“This initiative has provided important insights regarding management of RLS/WED, including the fact that patients continue to struggle with identifying treatments that adequately control their symptoms in the long term,” said Georgianna Bell, executive director of the Willis-Ekbom Disease Foundation. “Most RLS/WED patients have the disease for life, so understanding how to navigate disease management considerations in partnership with loved ones and physicians is important. The results of this survey will allow us to develop new resources to facilitate improved outcomes for patients, as well as serve as an important educational tool that helps the greater public understand the serious burden of this disease.”

Participants of the survey included 1,709 RLS/WED patients who are members of the WED Foundation and consisted of 1,194 women and 515 men. The results of the survey showed:

• Almost three in four (73%) of patients reported that they experience symptoms daily
• When asked about their current medication, only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s)
• Sixty-eight percent of patients said they “strongly agreed” that there is a need for greater physician knowledge and understanding of RLS/WED
• Forty-two percent of patients “agreed” that their healthcare provider does not understand their disease
• Ninety-three percent of patients “agreed” that they wished more effective medications were available to treat RLS/WED

“The Patient Odyssey survey results mirror what I and many of my colleagues are already seeing in our practices – that patients can struggle for many years to identify the cause of their symptoms and to arrive at an appropriate disease management plan,” said Dr. Philip Becker, President, Sleep Medicine Associates of Texas and longtime member of the Medical Advisory Board of the WED Foundation. “This initiative reinforces the need to continue to educate the RLS/WED community and the physicians who treat them. Those with RLS/WED deserve knowledgeable physicians who understand the disease. A proper diagnosis and sustained treatment of RLS/WED can offer benefit to those who suffer through restless days and restless nights.”

The survey was conducted by the WED Foundation and made possible through a corporate sponsorship from XenoPort, Inc. It was distributed to members of the WED Foundation and their spouses/partners via mail and was available online throughout the month of October.

About Restless Legs Syndrome/Willis-Ekbom Disease

RLS/WED affects people of all ages, genders and races. People who have the disease have to move their legs or arms to relieve uncomfortable, sometimes painful sensations. These sensations tend to get worse when the person is at rest, like when sitting or lying down, watching television or taking a long car ride. Because symptoms usually intensify in the evening, they often interfere with the ability to sleep..

While the causes of RLS/WED are not completely understood, several genes have been identified with an increased risk of RLS/WED. Other factors thought to contribute to the disease include iron metabolism and, possibly, abnormalities in the neurotransmitters dopamine and glutamate.

While there is not yet a cure for RLS/WED, treatment is available.

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 1992 as the Restless Legs Syndrome Foundation, the organization’s goals are to increase awareness, improve treatments, and through research, find a cure. The WED Foundation serves healthcare providers, researchers, over 4,000 members, and millions of individuals in the United States and Canada. The WED Foundation has awarded $1.4 million to fund medical research on RLS/WED causes and treatments. For more information, please visit http://www.Willis-Ekbom.org.

About XenoPort

XenoPort, Inc. is a biopharmaceutical company focused on developing and commercializing a portfolio of internally discovered product candidates for the potential treatment of neurological disorders.

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Agriculture pioneer, autism activist Temple Grandin receives 4-H Distinguished Alumni Medallion

This evening, National 4-H Council will hold its annual 4-H Legacy Awards Gala at the Hilton New York in New York City. Now in its fourth year, this special evening of celebration honors the remarkable achievements of individuals and corporations that have made lasting contributions in support of the 7 million 4-H young people around the world. Since its inception, the 4-H Legacy Awards have raised more than $2 million for 4-H programs.

This year, the 4-H Legacy Awards will honor Tractor Supply Company (TSC) with the 4-H Corporate Leadership Award; Temple Grandin, Ph.D. with the 4-H Distinguished Alumni Medallion; and Oklahoma 4-H’er Elisabeth Willis with the 4-H Youth in Action Award.

“4-H makes a significant, positive difference in the lives of young people all around the world. From working to feed a hungry planet, to driving STEM workforce development and improving the health and wellness of youth, their families and their communities, 4-H changes young lives.” said Donald T. Floyd Jr., president and CEO of National 4-H Council. “Our honorees tonight are amazing individuals and corporate partners that help us deliver on this important mission. We will celebrate their remarkable contributions and reflect on all that we have been able to accomplish together.”

Greg Sandfort, president and CEO of Tractor Supply Company, will accept the 4-H Corporate Leadership Award on behalf of the company. The annual award is presented to a corporation or partner that has demonstrated its dedication to 4-H through continued support and engagement. TSC and 4-H share the belief that youth development is vital to the success of our nation. Their investment of more than $3 million has positively impacted young people in more than 1,200 unique communities nationwide.

TSC stores have been investing in 4-H locally for many years, but a national partnership, developed in 2010, launched new semi-annual, in-store Paper Clover fundraisers across the nation in more than 1,200 TSC stores. TSC is helping to fund the various ways that millions of 4-H young people are learning life skills, citizenship and leadership qualities, and ultimately emerging as the future leaders of America.

Temple Grandin, Ph.D. will be presented with the 4-H Distinguished Alumni Medallion. Dr. Grandin is a world famous animal scientist, researcher and professor at Colorado State University. She is known for her revolutionary work in the livestock industry, and as an animal welfare and autism activist. A bestselling author whose life story sparked a self-titled, award-winning HBO biopic, Temple has inspired individuals worldwide. As a New Hampshire 4-H alumna, Dr. Grandin believes that exposing youth to agriculture at an early age will jump start their interest in a variety of future STEM careers.

The 4-H Youth in Action Award will be presented to Elisabeth Willis, an inspiring high-school student from Pittsburg County, Oklahoma who has made a significant impact in her community by single handedly raising $10,000 for the Therapeutic Equestrian Association of McAlester (TEAM)—a non-profit organization dedicated to helping youth and adults access equine therapy. In addition, Elisabeth helped establish a local TEAM 4-H club to raise awareness for the program. In addition to her passion for helping others, Elisabeth has served as an Oklahoma State 4-H Ambassador and through 4-H has learned the power of leadership and personal responsibility.

For more information on the 4-H Legacy Awards Gala and its honorees, visit www.4-H.org/gala.

About 4-H 
4-H is a community of six million young people across America learning leadership, citizenship, and life skills. National 4-H Council is the private sector, non-profit partner of 4-H National Headquarters located at the National Institute for Food and Agriculture (NIFA) within USDA. The 4-H programs are implemented by the 109 land grant universities and the Cooperative Extension System through their 3,100 local Extension offices across the country. Learn more about 4-H at www.4-H.org, find us on Facebook at www.facebook.com/4-H and Twitter at https://twitter.com/4H.

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