Our Role in Raising RLS Awareness

Be Visible, Be Heard By Linda Secretan, RLS Foundation Board Member & Support Group Leader An excerpt from the Summer 2016 edition...

Be Visible, Be Heard

By Linda Secretan, RLS Foundation Board Member & Support Group Leader

An excerpt from the Summer 2016 edition of  NightWalkers, the Foundation's quarterly magazine.

SDRAB. In some ways an appropriately dreary acronym, but hidden within is sunny opportunity. As one of your RLS Foundation board members, I drew the lucky straw when the opportunity came around for one of us to serve on the Sleep Disorders Research Advisory Board (SDRAB) of the National Institutes of Health (NIH) last year. When Congress authorized the NIH to develop a Sleep Research Plan, it also provided that it be updated every five years. This is the year, and we, the RLS community, have a seat at the table.

A decade and a half ago, RLS Foundation Board of Directors members Bob Balkam and Bob Waterman (chair emeritus) stormed the doors of the NIH to create awareness about RLS. From this came the early conferences about sleep and sleep disorders and the recognition of RLS as a real concern affecting the lives of real people – like us, our children, our parents. Thanks to our two advocates, to successive RLS Foundation boards and to you, the scope of that early effort has grown, and we are still invited to participate in shaping the research to come.

Here I need to sort out any impression that I’m sharing scientific expertise with my brainy cohorts who are leaders in sleep research. The title I’ve privately given myself is “ordinary person on the board.” It’s exciting to hear what leading researchers and clinicians are up to, but it can be intimidating to step up, to speak and to contribute. When that happens, I remember the words: You are not alone.

Truly, I am not alone at that long conference table. All of you, over 4,000 [members] strong, are right behind me. I hear your frustrations, your questions, and your hope for better treatments and a cure ringing in my ears. I remember how positive action spirals upward. I remember that I am the voice for all of us in this larger community. That is the role for which I have a clear charter. I represent patients – the ones whose concerns are not visible even to physicians and may be ignored by the research community.

You know someone with asthma, don’t you? You may have heard the sound of wheezing and seen the effect of breathing disorders on an active life. Physicians are in the business of helping, fixing and making it better. With asthma, they can see, hear and understand what’s right in front of them, and manage it from a solid base of knowledge and training. With sleep disorders? Not so much.

Research helps because it quantifies. It supplies proofs. When a physician can consult research, he or she is on solid ground for then managing or unearthing a cure. But where is the link when the doctor can neither consult research nor see the symptoms, and has not been trained to look for the effects of sleep disorders – insomnia, fatigue, depression, job loss and diminished quality of life – or even to ask the questions? This missing link is what our contribution to SDRAB is all about.

On SDRAB, we are starting to draw together the many strands of this Sleep Disorders Research tapestry to create the 2016 Research Plan. What is the thread that runs through it all? Over and over again in the margins of my notes there is one word. Over and over I reach for the mic to speak the word again. Over, many times over, I play my broken record in our working group. You have guessed already. The word is awareness. Awareness is fundamental to our aims. If you start to unravel the fabric, you’ll have a hard time finding the beginning, so tightly is the need for awareness woven into the whole.

Without medical school training, physicians will continue to be blind to our disease. Without important research to back up the need, medical schools will not incorporate training. Without the prize of recognition that accompanies well-funded landmark studies, researchers will ignore opportunities to pursue the byways of sleep.

Without awareness of the impact of disordered sleep on lives, careers and families; of what one can contribute and who one can become, there will be no reason for deep-pocket sponsors to fund research. The NIH is a source of major funding, but underwrites only 10–15 percent of the proposals that come their way. To secure a portion of this funding, proposals for sleep research must ride in on rails of urgency.

As individuals, we give what we can through the RLS Foundation, providing crucial funds for studies that can grow to NIH stature. This generosity is a vital ingredient and has enabled big leaps in our understanding of RLS. But there is more: It is up to us to raise our voices wherever we are. We don’t usually think of ourselves as fist-raised, storm-the-barricades activists. Yet simply by being prepared to champion something we believe in and take action wherever we can, we will make strong that thread of awareness. We can assure that our voice is heard. You already have, you know. I applaud your efforts!

So many of you answered the urgent call to comment on the Request for Information from the NIH* that you jammed the NIH communication center with calls to report a faulty email link! Rarely does the public respond so well when invited to give input. Congress hears from only 4–5 percent of constituents – even with email and click-and-send forms. Be visible. Be heard. Even a small step, like sending a memo will help. And it will make you feel more alive, more enriched and happier. How can I be sure? There is research to support that!

*Editor’s note: In May 2016, the NIH sought public input on its Sleep Disorders Research Plan

Stay tuned for the Winter 2017 NightWalkers for advocacy tips from Linda!

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