IT’S A COMMON CONDITION THAT MOST PEOPLE NEVER HEARD OF: RESTLESS LEGS SYNDROME
Now For First Time in 12 Years There Are Updated Clinical Practice Guidelines for RLS Treatment

Restless Legs Syndrome (RLS) is a disruptive sleep-related movement disorder characterized by a strong urge to move one or both legs (and sometimes the arms), usually accompanied by an uncomfortable feeling in the legs.  rls.org

The condition is common and impacts 2-3 % of adults in the United States.

RLS is most prominent in the evening or at night and symptoms may get better with movement. This often leads to sleep disruptions that impact quality of life and can lead to difficulty falling asleep or staying asleep, the urge to get out of bed to stretch or move their legs, fatigue or daytime sleepiness, behavior or mood changes, difficulty paying attention, remembering things or contextualizing as well as depression or anxiety.

Now, for the first time in 12 years, the American Academy of Sleep Medicine (AASM) has published an update to its Clinical Practice Guidelines for the treatment of RLS. These guidelines may have a major impact on how people with RLS are treated with the goal of finding the most effective treatment for symptom relief.

Dr. John Winkelman, MD, PhD, Chief of the Sleep Disorders Clinical Research Program in the Department of Psychiatry at Massachusetts General Hospital will be available to discuss the latest advances in RLS treatment guidelines and what patients and physicians should be aware of.

Interview courtesy: Azurity Pharmaceuticals
References available

#rls #restlesslegssyndrome #drjohnwinkelman #azuritypharmaceuticals #drwinkelman #azurity

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HEAR HOW ONE COLLEGE STUDENT’S LIFE CHANGED FOREVER AFTER NEARLY DYING FROM A VACCINE-PREVENTABLE DISEASE

Dr. Len Friedland, practicing physician, vaccine researcher and Vice President and Director, Scientific Affairs and Public Health, Vaccines, GSK

Jamie Schanbaum, meningitis survivor, US Para-athlete and GSK spokesperson

BACKGROUND
It’s that time of the school year where teens and young adults are counting down the days to the holidays and a much-needed break from classes. In 2008, Jamie was a college freshman getting ready to complete her first semester and head home for the holidays when her life changed forever. In just 24 hours, she went from being a healthy college student to fighting for her life after contracting meningococcal disease, also known as meningitis. Jamie spent seven months in the hospital, ultimately losing both of her legs below the knees, and all of her fingers due to the disease. While many colleges require MenACWY vaccination, MenB vaccination has only been available since 2014, and most colleges still do not require it. She is sharing her story to ensure that parents are aware there are 2 different types of vaccines to help prevent meningitis – one for MenACWY, and one for MenB, , to help other families avoid her experience. During the pandemic, it’s more important than ever for parents to educate themselves and utilize the vaccines available to help protect their kids against vaccine-preventable diseases they may be at risk for, like meningitis.

DID YOU KNOW?
• Meningitis is an uncommon, but serious illness that can cause life-threatening complications, or even death. Early symptoms of meningitis may be similar to those of the flu, but can progress quickly and can be fatal, sometimes within 24 hours. ,
• Up to 1 in 5 meningitis survivors suffer long-term consequences, such as brain damage, amputations, hearing loss and nervous system problems. Among those who contract meningitis, 1 in 10 will die, despite treatment, sometimes in as little as 24 hours.7
• Teens and young adults are at an increased risk for contracting meningitis because it can spread through certain common behaviors such as living in close quarters like college dorms, kissing, and sharing drinks, utensils, or smoking devices.4,
• From 2011 through March 2019, meningitis B (MenB) caused all US college meningococcal outbreaks, which involved 13 campuses, 50 cases, and 2 deaths among an at-risk population of approximately 253,000 students.

VACCINATION IS STILL IMPORTANT
• Even if your college-aged children are not attending in-person classes due to COVID-19 precautions, they may still be at risk for diseases like MenB.4
• Your teen or young adult may have received MenACWY vaccination when they were younger, but most have not yet received MenB vaccination, which only became available in 2014. Recent CDC data show that still, only about 1 in 5 17-year-olds in the US received at least one dose of MenB vaccination in 2019.12
• Winter break is a good time to schedule a wellness visit and talk to your child’s doctor about the two different types of vaccines to help prevent meningococcal disease – one for MenACWY and one for MenB.2,3

Interview opportunities are courtesy of GSK

Visit www.meningitisB.com for more information and resources to bring to your child’s next wellness visit.

#jamie #schanbaum #meningitis #survivor #para #athlete #gsk #spokesperson #len #friedland #physician #vaccine #researcher #scientific #affairs #public #health #holidays #college #students #life #change #disease #meningococcal #body #legs #knees #fingers #risk #prevent #flu

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Imagine waking up each morning to drum and dance in one of the world’s primary cradles of rhythm, amongst the world’s prime practitioners of Body Music. Then translating traditional rhythms to the conspicuous sounds of palms, fingers, legs, feet, torso, voice – exploring the confluence of Ghanaian and Body Music traditions in an uncharted cross-cultural language. Throw in market days, village excursions, intercultural exchange, and the 10th International Body Music Festival (IBMF) in Dzodze, Ghana – 6-16 July 2018 will be your unforgettable Body Music Adventure.

Body Music – clapping, snapping, stepping and vocalizing – is an amalgam of composition and choreography, music you can see, dance you can hear. Humans basically have the same instrument, yet they express music on it so differently culture to culture. There is an intimacy, a primacy, of the connection people have when you use your body as the sole instrument. It’s both personal and universal.

While Ghana is “a hotbed of percussive innovation and world rhythm,” IBMF founder and Artistic Director Keith Terry explains, “historically, there has been very little Body Music in their music traditions. There is a potential for the rhythmic language that is everywhere in Western Africa – not, as yet, translated into Body Music – to be explored and articulated in new ways, and the interchange is very exciting. Our partner, Dr. Kofi Gbolonyo, an ethnomusicology professor and Dzodze native, invited the IBMF to his village for this reason.”

Co-produced by Crosspulse and Dr. Kofi Gbolonyo and the Nunya Music Academy, the 10th IBMF consists of TEN days of concerts, workshops and cultural exchange with some of the world’s finest contemporary and traditional Body Musicians, plus intensive workshops in Ghanaian drumming and dance. No prior experience in either art form required, but rampant curiosity expected.

This year’s IBMF will feature Ghanaian artists, plus international Body Music artists from the US, Brazil, France, Israel, Columbia, Austria and South Africa — in concerts, workshops, cross-cultural collaborations, jam sessions, and more. The IBMF offers a unique musical and cultural immersion opportunity for international participants to experience and engage with Ghana while embodying its rhythms in diverse ways.

“This is not a luxury vacation, but rather a deep cultural, Body Music adventure,” says Terry. “Participants will be based in a Ghanaian village for most of it, then in Accra, interacting with cultural and musical institutions there through exchanges, workshops, and nightlife. Mornings will be spent studying music and dance, and in the afternoons, students will learn to translate that learning into Body Music. Trips to other villages to see ceremonies, workshops, and performances will provide the international participants with additional opportunities to experience the roots of Ghanaian culture.”

The International Body Music Festival is both a culmination of Crosspulse’s 40 years developing Body Music as a communicative performance art and educational model; and a jumping off place for a powerful forum of cross-cultural rhythmic performance and community development.

Over the course of its nine previous incarnations, the International Body Music Festival has become a meeting ground for both students and teachers of the various styles of global Body Music. Since 2008, the IBMF has been hosted around the world, from Brazil to Turkey to Indonesia to Paris, though every few years it returns to its home base in the San Francisco Bay Area.

The Festival is a moving hub for performers who engage with humanity’s first instrument: the body itself. The shushing of palms, the snapping of fingers, the stomping of feet, and the seemingly infinite potential of the throat and mouth have inspired people worldwide to create moving music, audible dance. Tap, stepping, hambone, flamenco, beatbox, every style that forefronts the sounds of bodies in motion. It’s the oldest music on the planet, and it’s brand new.

Now, a full 40 years since he first coined the term “Body Music” back in 1978, Terry says this will be the final full-scale festival he will produce, preferring to concentrate on professional training and IBMF MiniFests after Ghana.

In honor of this decade-long benchmark, the Percuaction Global Percussion Network plans to honor Terry’s contributions to the field by presenting him with The Percuaction Lifetime Achievement Award during the time of the festival in Ghana, which adds a special value and significance to this year’s program

The Percuaction Lifetime Achievement Award is presented on an annual basis and is the organization’s highest recognition. Since 2012, the prize has acknowledged the life-time missions and achievements of percussive luminaries who have supported Percuaction’s vision of a global rhythm community.

But despite Terry’s impending departure from producing IBMF in upcoming years, he’s not at all worried about the future of the Body Music movement.

“The community will continue to grow, and there are so many places that are interested in hosting IBMF MiniFests in their communities,” he says, “Each new year, I marvel at the quality of the students and the state of the art form. You can see there are lots of embers sparking and we’re leaving Body Music in good hands with the younger generation…I can take a step back. As has happened in past IBMF locations like Bali, Brazil, Turkey, when the young generation experiences Body Music for the first time, then you go back a year later and see it everywhere. I’m really excited by this. It’s happening. It’s moving!”

Confirmed teachers/performers for IBMF 2018 (more announced weekly on our website):

Bryan Dyer, circle singing/beatbox (USA)
Dr. Kofi Gbolonyo, dance/sweat (Ghana)
Evie Ladin, MoToR/dance (USA)
Rémi Leclerc &Quelen Lamouroux, Humanophone (France)
Tupac Mantilla, body music (Columbia)
Molodi, stepping (USA)
Pedro Consorte & Zuza Gonçalves, Musica do Circulo (Brazil)
Max Pollak, RumbaTap (Austria/USA)
Charles Raszl, choreography (Brazil)
Lior Shoov, improvisation (Israel)
Keith Terry, body music (USA)
Vuyani King Gaba Gumboots Idadla Feni, gumboot (South Africa)

Please check out the details and read our full press release on our OPK here. And please let me know if you’d like to cover let me know if I can arrange an interview with IBMF Founder and Creative Director Keith Terry!

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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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