Ekontos

Ekontos
Joined Oct 2014
Ekontos
Joined Oct 2014

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.

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.

PEP Highlight: Matt Epstein

Q: Tell us a little about yourself?

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.

Q: Why did you join MyApnea.Org?

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.

Q: How have you participated in MyApnea.Org?

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.

Q: What does patient-centered research mean to you?

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.

Q: How do you think patients may change the way research is done?

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.

Q: What do you think are some of the biggest needs for patients with sleep apnea and how can research help those?

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.

Q: In what ways do you think MyApnea.Org will make a difference?

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.