Leadership & Governance

Sleeptember® is a program of the American Sleep Apnea Association (ASSA) and it’s partners. The Leadership Board, consisting of patients and patient advocates, who are accountable to the Sleeptember community and general public, governs the campaign and disbursement of future research funds. Its role is to ensure that the campaign maintains the highest standards of performance, governance, accountability, transparency and cost to fundraising ratios. The Board oversees all activities and future research programs to ensure that the patient’s voice is reflected in all major decisions and implementation.

In keeping with the campaign’s focus on minimizing administrative costs, all Board members are unpaid for their time and efforts.

Sleeptember Leadership Board

Adam AmdurAdam Amdur is the chief operating officer of the American Sleep Apnea Association. He was was diagnosed with severe obstructive sleep apnea in 2008, more than thirty years after he first showed symptoms. As the first patient principal investigator and co-founder of the Sleep Apnea Patient Centered Outcomes Network (SAPCON), a part of the National Patient-Centered Clinical Research Network (PCORnet), Adam worked to bring together patient leaders from each patient-powered research network (PPRN) and clinical data research network (CDRN) in order to discover a common patient voice as it relates to research best practices and collaboration with diverse stakeholders. Follow Adam on Twitter: @sleepapneabook.

Bill Ccs_copd_personal_story_bill_clark_articlelark is Senior Director of Patient and Community Outreach for the COPD Foundation, which he helped start in 2005. He is a community liaison for the foundation and regularly oversees screening events across the country.  Bill is an accomplished patient advocate especially for people with chronic obstructive pulomonary disease, alpha-1 antitrypsin deficiency, and sleep apnea. Bill has been involved in Bill is a retired special education teacher and Boy Scout leader.

Madelaine E. Faulkner, MPH leadership

Madelaine E. Faulkner, MPH is the Project Director for the Health eHeart Alliance at the University of California San Francisco where she cultivates patient-centered research processes.  She has extensive research experience leveraging technology to design, implement and evaluate health programs, feedback mechanisms, and result dissemination loops.  Her background is in public health with an emphasis in Community Health Education and Epidemiology.  She designs and implements study campaigns, outreach, and community building mechanisms for broad community/patient engagement in mobile health-tech environments.

Seth D. Ginsberg -100px

Seth D. Ginsberg began his 20-year career as a health advocate at age 13 when he was diagnosed with a form of arthritis called Spondyloarthritis. Since then, Seth has evolved into a passionate thought leader and social entrepreneur in the global healthcare conversation. He believes that all patients with chronic disease deserve the best access to care, and that it is everyone’s responsibility to participate in patient-centered research to unlock the clues needed for better health outcomes in the future. Seth spends his energy engineering that future. At 18, Seth helped pioneer the online patient community for others like himself who were suffering with arthritis, co-founding CreakyJoints. The Global Healthy Living Foundation is the non-profit parent organization of CreakyJoints, which Seth and CreakyJoints co-founder social entrepreneur Louis Tharp, created in 2004. Follow Seth on Twitter:                                                 @SethSaidSo.

Will Headapohl -100px

Will Headapohl is a patient advocate focused on the challenge of getting all undiagnosed apnea sufferers into treatment. His advocacy work is aimed at mobilizing all those touched by the disease, including medical device companies and victims. He was a founding member of the Steering Committee for the Sleep Apnea Patient-Centered Outcomes Network, funding by the National Patient-Centered Clinical Research Network (PCORnet). Will’s resume includes co-author of the book Sleep or Die, chairman of the American Sleep Apnea Association, executive vice president of CNET, chief information officer of Gateway, consultant to Qualcomm, member of the evangelism group at Apple, and consultant to cloud-based Internet startups. He is a graduate of Stanford University with a masters and bachelors in Management Sciences and Engineering. Follow Will on Twitter: @willheadapohl.

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Manny Hernandez is the co-founder and president emeritus of the Diabetes Hands Foundation in Berkeley, California. He is a Venezuelan-born nonprofit leader, a social media author, and a passionate Hispanic diabetes advocate and key opinion leader who has lived with LADA (Latent Autoimmune Diabetes in Adults) since 2002. Before DHF, he worked with Procter & Gamble, Quepasa.com, Earth911, Pets911, Full Sail University and Ning. He wrote “Ning for Dummies,” (April 2009) and collaborated in other books on social media and health 2.0. Manny completed his undergraduate studies in Electrical Engineering at Universidad Metropolitana, Caracas and his Masters degree from Cornell University. He is a fully bilingual (Spanish/English), fluent in French and conversational in Italian and German. Follow Manny on Twitter: @askmanny

Anna McCollister-Slipp

Anna McCollister-Slipp is co-founder of Galileo Analytics, a visual data exploration and advanced data analytics company focused on democratizing access to and understanding of complex health data. Anna’s passion for improving health care research through innovation in health data analytics is rooted in her personal experiences living with type 1 diabetes for 28 years. In her professional and personal activities, Anna seeks to build platforms for better understanding of and engagement with the needs of patients. Additionally, Anna is a vocal advocate for improving methods for comparative effectiveness research and the development of more refined outcomes measures to better guide care and assess treatments. She serves on the FDA/ONC/FCC HIT Policy Committee’s FDASIA Working Group, which will help guide the development of a nationwide HIT infrastructure. She is a member of the FDA’s advisory committee on General Hospital and Personal Use Medical Devices, and serves on the advisory committee for FDA’s MDEpiNet, which is working to establish a system for improving medical device product safety surveillance and comparative effectiveness research. Follow Anna on Twitter: @annamcslipp.

cara

Cara B. Pasquale, MPH is the Director of the COPD Patient-Powered Research Network (COPD PPRN) at the COPD Foundation. Her work focuses on engaging patients in research, facilitating collaborations with stakeholders and building the research network. She has worked in the fields of law and international education before obtaining her MPH with an emphasis global health and chronic conditions. She believes that it is critical to engage patients in research, increase representativeness of research studies and focus on research questions that are important to the community.

 

Bray Patrick-Lake MFS -100px

Bray Patrick-Lake MFS is director of patient engagement for the Duke Clinical and Translational Science Award (CTSA) and director of stakeholder engagement for the Clinical Trails Transformation Initiative (CTTI). In these positions she supports efforts to actively engage participant partners in Duke research programs, as well as patient advocacy organizations and other stakeholders in efforts to improve clinical trials. She implements strategies to enhance awareness of Duke’s work, particularly with patient advocates, and extend its impact by working in partnership with the patient advocacy community on research design and conduct and improvement of the clinical trial enterprise.

In 2010, Bray founded the PFO Research Foundation in response to the lack of definitive scientific information regarding the condition of patent foramenovale (PFO) after being a patient in an aborted clinical trial. Bray is a member of the National Patient-Centered Clinical Research Network (PCORnet) Coordinating Center’s Executive Leadership Committee where she develops patient engagement strategies. She holds a BS in zoology from the University of Georgia and a Master of Forensic Sciences degree from National University in La Jolla, California. Follow Bray on Twitter: @BrayPatrickLake.

Carl SteCarl Stepnowsky, PhD -100pxpnowsky, PhD is chief science officer of the American Sleep Apnea Association and a research psychologist who specializes in behavioral sleep medicine. Carl currently holds a dual appointment with the Veterans Affairs San Diego Healthcare System as a Health Science Research Specialist and University of California, San Diego as an Associate Adjunct Professor. He saw a need to apply a behavioral science approach to sleep apnea diagnosis and management, given that sleep apnea is a chronic disease that needs to be managed over time. He has been the principal investigator and co-investigator on multiple research grants with funding from the Veteran’s Administration, Agency for Healthcare Research and Quality, National Institutes of Health, and Patient-Centered Outcomes Research Institute among others. Carl received his undergraduate degree from Brown University and his PhD in Clinical Psychology from UCSD. He is a sleep apnea patient and patient advocate.

 

 

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