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Project Sleep is a 501(c)(3) non-profit organization raising awareness about sleep health and sleep disorders. Project Sleep’s current major programs include the Sleep Walk signature event series, the annual international SLEEP IN campaign, the Jack & Julie Narcolepsy Scholarship, and the NARCOLEPSY: NOT ALONE™ campaign.
Project Sleep’s Sleep Walks are held nationwide, bringing together different stakeholders from the sleep community—doctors, patients, advocates, and more—for one to two mile walks followed by celebrations. To date, Project Sleep has hosted Sleep Walks in Washington D.C., Tampa Bay, Jacksonville, Austin, Dallas Fort Worth, and Hawaii.
Each year during the weekend following National Sleep Awareness Week in March, Project Sleep hosts the international SLEEP IN campaign. Participants pledge to stay in bed for 12-48 hours while using social media to raise awareness about sleep as a pillar of health. By inviting participants to stay in bed, the SLEEP IN campaigns offer a relaxing and restorative alternative to events that require participants to expend energy to participate.
The Jack & Julie Narcolepsy Scholarship is the first-ever scholarship program supporting students with narcolepsy, a chronic neurological disorder of the sleep/wake cycle. The scholarships, $1,000 each, are awarded to high school seniors planning to attend four-year universities who exemplify courage and hope while living with narcolepsy.
NARCOLEPSY: NOT ALONE™ is an international awareness campaign and stunning photo series. While narcolepsy is a serious neurological disorder affecting 3 million people worldwide, it is often considered a joke causing people living with narcolepsy to feel lost and alone. Project Sleep invites people with narcolepsy and their supporters to stand proud and tall by submitting photos. Thus far, the campaign has collected over 1,100 photos from all 50 U.S. states and 42 countries around the world.
There are two threads dedicated to discussing this therapy. Please join the discussion!
So glad that the MyApnea community has been able to support you in your journey.
Meet PEP Member Sherry-
Q: Tell us a little about yourself?
I have been married to Jimmy for 34 years. I have two sons, Zack, 24 and Tyler, 21. I have been self-employed for 32 years.
Q: Why did you join MyApnea.Org?
Being diagnosed with sleep apnea in my 20's, I am always eager to learn all I can about research, remedies and hopefully one day a cure.
Q: How have you participated in MyApnea.Org?
After having joined MyApnea.Org as a patient and completing the research surveys, I was invited to apply to serve on the Patient Engagement Panel (PEP) for MyApnea.Org. I immediately applied and was selected as a PEP Member. As a PEP member, I have participated in forums which I encourage all members to utilize for both asking questions and learning from others. I participate in monthly conference calls and lead the PEP Research Sub-Committee group. I was fortunate to participate in a live meeting with the PEP, the MyApnea.Org Steering Committee and Research Team getting to know them on a more professional level as well as learning more through live presentations and brainstorming together. It was through proofing pediatric surveys for the MyApnea.Org site that I recognized and became aware of the probability that my youngest son had probably suffered with sleep apnea for his entire life.
Q: What does patient-centered research mean to you?
Patient-centered research gives patients a voice to be heard. Health Care Professionals have studied about their chosen field and may be an expert in making a diagnosis and providing treatment. If they are driven and passionate about what they do, they may have even participate in or study ongoing research in an effort to make a difference in the lives of their patients as new discoveries are revealed. However, it is the patients who live with it, deal with it, cope with it and care about finding new outcomes and new awareness to a much greater degree in an effort to improve their own life. So often patients just trust and put faith in the knowledge of their health care provider at a time when it is imperative for patients to be empowered to be their own advocate.
Q: How do you think patients may change the way research is done?
Patients who are willing to collaborate and share their real life experiences, issues and challenges with other patients, health care professionals and research groups have a powerful voice. New awareness and outcomes could be revealed by the collective collaboration and brain power between practitioners and patients, particularly when the practitioners are willing to listen and seek to understand. The winning results of that kind of collaboration would be more powerful than any of us could imagine.
Q: What do you think are some of the biggest needs for patients with sleep apnea and how can research help those?
Sleep apnea patients need a treatment solution that is both effective and the least invasive. Sleep apnea patients need a deep understanding of the severe consequences that could result from untreated sleep apnea over a period of time. Research could provide numbers, findings and results that could enhance that understanding thereby making the sleep apnea patient more motivated to be inconvenienced by the treatment modalities. My personal hope Is that research could reveal a cure or more effective and less cumbersome treatment options.
Q: In what ways do you think MyApnea.Org will make a difference?
MyApnea.Org is making a difference in connecting patients, research teams and health care providers on its site. There is the opportunity for all to collaborate inside the forum. The surveys at MyApnea.Org provide a way for patients to share their personal experiences with the research team. The compilations of this feedback is creates powerful numbers for research purposes. The surveys also give perspective patients who question the likelihood of a diagnosis insights to see if there are any questions that resonate with their experiences thereby encouraging them to seek advice of a qualified healthcare professional. MyApnea.Org additionally provides valued education helping any patient or perspective patient to gain more insights and awareness about sleep apnea.
I was hoping someone could tell me if there is anything to help with this problem
Oops I hit the enter too soon, I meant to say anything other than the the mask, I have tried and I just cannot deal with it at night, confusing.
We came across this wonderful poem about sleep apnea in the New York Times Magazine and thought the MyApnea members would like to read. You can visit the NYTM site to read: http://tinyurl.com/hfb5dx8
What are your thoughts? Does the imagery used speak to your experience?
PEP Highlight: Matt Epstein
I am married with two grown children. I have had multiple careers including practicing law, serving as legal counsel to the state mental health agency, serving as Executive Director of the Center for Child and Family Health, the Institute of Forensic Science and Public Policy, and the Triangle Global Health Consortium, teaching high school, college, and law school, serving as a State Representative, and starting various businesses related to solar energy and energy conservation, real estate development, and precious metals, and working with delinquent youth, prisoners, and drug addicts. I am presently a high school math teacher and a principal in both a for profit consulting company and a not for profit service organization. I earned my degrees at Yale University, University of New Hampshire School of Law, and the Boston University Graduate Tax Program.
I was diagnosed with Sleep Apnea quite by accident at age 59 when I accompanied my wife to a medical appointment and struck up a casual conversation with her doctor while we were waiting for a nurse to join us. It is no overstatement to say it changed my life. Knowing how many people are undiagnosed and how ineffective treatment is for so many, I came to realize how important communication between patients, researchers, and clinicians would be to improving outcomes. I saw MyApnea.Org as an unique opportunity to learn more for myself and help others.
My days are pretty full with not much free time. And the free time I do have, I like to spend with family, working out, traveling, and taking classes. If it were not for MyApnea.org, I would have little involvement with the Sleep Apnea community. Through MyApnea.org, I am able to help other patients, contribute to effective research and dissemination, and learn about latest developments by filling out surveys, rating research, contributing to forums, and reading what patients, practitioners, and researchers have to say, all in just a few minutes a day.
I worked in a field, childhood trauma, where there was both tremendous need and great research that rarely made a difference. Researchers blamed clinicians for not keeping up with evidence based interventions and clinicians blamed researchers for developing interventions that were ineffective in the real world. Both were right. If they had invested half the energy wasted on finger pointing into working together to develop interventions that worked in practice and disseminating those findings, tens of thousands of children and their families would be much better off today. MyApnea.org brings together patients who want to inform researchers with researchers who want to learn from patients so that researchers can direct their talents towards solutions that work for people and more people can be effectively diagnosed and treated.
Research dollars are scarce and those that are wasted are tragic. All too often there are industry funded studies designed to promote their own products and drugs and public dollars controlled by small cliques of recognized leaders who speak mainly to themselves. Their research design is often elegant with carefully crafted protocols and sophisticated statistical analyses. Too bad they often answered the wrong questions. If those scarce resources could be directed toward the solutions sought by patients, that great work would result in drastically improved outcomes with high efficiency and enthusiastic dissemination. That is the promise of active patient involvement.
I have to admit that since diagnosis, as much as I dislike the CPAP, it works for me and I have made it a part of my life. Not everyone is so lucky. We need to find better ways to teach practitioners about symptoms and indicators in order to diagnose more with the condition. We need to learn more about why CPAP therapy works for some and not others and craft solutions to those problems whether they are behavioral, better training of clinicians, improved equipment, or effective alternative therapies. We need to bring down the cost of screening, diagnosis, and treatment. And finally, we have to learn if and how Sleep Apnea can be prevented. The gap between those who suffer from Sleep Apnea and those successfully treated is unacceptably large and probably some multiple of the gap for other conditions.
MyApnea.org has and will make a difference on both the macro and micro level. Everyone who logs on or even just reviews the postings learns something. Those not yet diagnosed increase the likelihood of meaningful evaluation. Those already diagnosed learn from the experience of others how to better improve their own outcomes. Clinicians learn to do a better job identifying Sleep Apnea among their patients. Researchers learn what patients care about and how they can seek and produce meaningful answers. It also is a paradigm shift, helping to create a world where patients, clinicians, and researchers collaborate for the benefit of all with the promise that some day it will be the norm for all conditions.
Every month we will highlight one of MyApnea.Org's Patient Engagement Panel members.
ATTENTION SLEEP TECHNOLOGISTS!
We are excited to share our first research survey that was generated by our patient community. Anecdotal evidence was shared within this very forum that many sleep technologists may themselves have sleep disordered breathing issues. In effort to provide some empirical evidence, we worked with our Patient Engagement Panel to develop a short survey on this topic of interest.
If you are a sleep technologist, we encourage you to participate in the anonymous survey at https://tryslice.io/survey/sleep_tech.
Patients- we encourage you to share this post/survey with your technologist.
Providers- we encourage you to share this post/survey with your sleep technologist colleagues.
Remember to come back soon to see the survey results!
A great new article in Fortune Magazine about the power of big data for sleep health. Give it a read and let us know what you think!
Thanks @Joseph, Brigham and Women's Hospital issues a press release yesterday about MyApnea. Glad to see it was picked up by some!
Poor sleep quality has been linked as a risk factor to many other health conditions. Here is an article from the Huffington Post that outlines the association between poor sleep and breast cancer. A potential question for Rank the Research? What do you think?
We have taken the first step to providing a more customized MyApnea for every member. You can now select how you describe yourself in terms of your experience with sleep apnea: are you a diagnosed patient; perhaps you think you are at risk of developing sleep apnea; are you are caregiver or parent of someone with sleep apnea; or are you a provider or researcher? Please visit https://myapnea.org/describe-yourself and select your role. In the future, you will see content and surveys that are more tailored to you and your experience with sleep apnea. Remember, your data has power and the more you participate in MyApnea the more you will help shape the future of sleep apnea research.
Health and sleep care providers are vital partners in the MyApnea.Org network. We are happy to announce that we have now made it easier for providers to refer their patients to MyApnea.Org. Interested providers can join the network via the new provider sign up page. After registering, providers can customize their own welcome page that includes a unique URL (web address) to share with patients. The MyApnea.Org team will then be able to offer aggregate de-identified data to providers based on members who joined via their personalized portal.
Our aim is to constantly improve MyApnea.Org based on your feedback. We are excited to announce the beta release of our new layout and design. Members who would like to test drive the beta release can select the beta option on their Account Settings page (top right of page). As always, please let us know what is working well and where you think we can continue to improve.
I love The Mindy Project and Mindy Kaling. Did anyone see this week's episode where Mindy had on her "sleep apnea mask"? What do you think about the portrayal of sleep apnea on scripted TV- favorable or unfavorable? Would love to here people's thoughts!
What are the symptoms or affects that impact you the most? What would you like to see tracked through tools on your personal dashboard in the Research Section? What types of research would you like to see conducted related to lack of treatment or treatment options and daily performance?
MyApnea.Org is a community built by patients and researchers for others to share and learn from one another. Your ideas about the tools and functions that you would like to see on the website and on your personal dashboard in the Research Section are important to us. Give us ideas on how to promote the website to others. The more members we have, the more we can learn from each other and contribute to future research.
We are thrilled to share that Sleepless in America, the first feature documentary produced by The Public Good Projects, will have its premiere on the National Geographic Channel on Sunday, November 30th at 8/7c. Come back and share you thoughts here with the MyApnea.Org community!
Hi grayghost4 and welcome! First, we apologize for the slow response on the survey. We are looking into the issue and believe it was due to server maintenance over the weekend. Second, since MyApnea.Org is considered a research study it is governed by the Institutional Review Board (IRB) at Brigham and Women's Hospital. In order for us to abide by the standards of medical research we unfortunately cannot allow medical advice to be shared among network members (liability issue)- hence, the posts are reviewed before uploaded. The specific goal of the forum here at MyApnea.Org is to allow network members to share their thoughts on where they would like research to go in the field of sleep apnea. What questions do you think need to be answered? We do want to hear from each and everyone of you and we want to provide a space that is a bit different from other forums that are out there. Thank you again for visiting and we hope you stay connected to the network as we grow and find answers together.
Hello! I am a member of the MyApnea.Org team and we are working hard to make this site a valuable and easy to use resource for all members. We are currently working on a site re-design to improve navigation and we want to know what you think about the research surveys. Right now we have offered one longer survey that asks all the important questions providers and researchers need to shape research questions and provide answers over time. Would you prefer to answer one longer survey or a couple of shorter surveys? Thank you for your input and for helping us build a better MyApnea.Org!