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November is Epilepsy Awareness Month

In 2003, the U.S. Congress passed a formal resolution declaring November as National Epilepsy Awareness Month. In keeping with this tradition, the Managing Epilepsy Well Network is launching a 30-day Twitter campaign to increase awareness about epilepsy self-management among people with epilepsy, their caregivers and their healthcare providers.

FOLLOW the @MEWNetwork on Twitter for the #30DaysofSelfManagement awareness campaign. LOOK for self-management advice and information for people with epilepsy and those who provide care for them. SHARE your experiences and your tips with others, on how to better manage seizures and epilepsy.

(Posted November 1, 2015)

 

PEARLS Training: A community-based depression treatment intervention for adults with epilepsy; March 19-20, 2015, Seattle, WA

 

Cost

Includes training materials, CE credit, and light refreshments.

$445/person before March 13
$495/person after March 13

Accreditation

This program has been approved for 15 CEUs by the NASW Washigton State Chapter

Licensed Social Workers, Marriage and Family Therapists and Mental Health
Counselors are eligible

Provider number is #1975-37

“Very effective, extremely knowledgeable, and engaging facilitators. The role play was a valuable part of the training."

- PEARLS Trainee

Register for PEARLS Training


.Download PDF of brochureDownload program brochure:: PEARLS brochure

PEARLS Program Logo

The PEARLS Program is highly effective at reducing depression symptoms and improving the quality of life for individuals. An evidence-based behavioral treatment program, the PEARLS training focuses on two client populations: older adults and individuals with epilepsy. We teach you the research and rationale, the different components of the intervention, the infrastructure needed, and the process of doing PEARLS – all to ensure you are successful at improving care for your patients.

The goals of this training are to:

  • Learn the key elements of this multi-component program
  • Effectively assess for depression.
  • Recognize psychosocial needs and stressors.
  • Recommend steps to improve clients' mental health and quality of life.
  • Gain practical skills

Participation in a PEARLS depression treatment program for older adults was shown to be three times as likely as usual care to result in complete recovery from depression. In addition, adults with epilepsy receiving PEARLS were more likely to have reductions in depression and improvements in emotional well-being, as compared to usual care.

PEARLS is included in the Substance Abuse and Mental Health Services Administration's National Registry of Evidence-Based Programs.

To learn more about the upcoming PEARLS training, visit www.pearlsprogram.org/Training.aspx

Register Now

 

Sandy Helmers, MD, MPH2014 'Hallway Conversation' Podcast on Webease now available on Epilepsy.com

In this episode of Epilepsy.com's Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com, interviews Sandra L. Helmers, M.D., M.P.H., Professor of Neurology and Pediatrics at Emory University about WebEase, a tool for the self-management of epilepsy and seizures. Dr. Helmers presented about WebEase during the Shark Tank Competition at the Epilepsy Pipeline Conference 2014.

 

 

Listen to the Epilepsy.com Podcast

(Posted August 6, 2014)

 

 

My Seizures, Know More: an On-Line Tool developed by Vision 20/20

Empowering people living with epilepsy to seek more specialized epilepsy care if they are having seizures, side-effects from drugs, other health problems, or social or educational issues.

 

www.myseizuresknowmore.com

(Posted April 12, 2014)

 

Martha Sajatovic2013 'Hallway Conversation' Podcast on PEARLS Community-Based Depression Treatment Program for Adultsis now available on Epilepsy.com

In this episode of Epilepsy.com's Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com , interviews Drs. Paul Ciechanowski and Naomi Chaytor from University of Washington about PEARLS community-based depression treatment program for adults with epilepsy and comorbid depression.

 

 

Listen to the Epilepsy.com Podcast

(Posted March 21, 2104)

 

MINDSET MINDSET Program Featured on KTRK-TV Houston,TX

The MINDSET tablet program has been featured on Houston's local ABC affiiate's Health Check News segment (KTRK-TV) .

MINDSET is a clinic-based computer program meant to assist patients and their health care providers in communicating about the patient's epilepsy self-management and to more effectively enhance this behavior. MINDSET stands for Management Information & Decision Support Epilepsy Tool and is mounted on a small tablet that is accessed by the patient and their provider during the regular clinic visit.

To read more about MINDSET and its potential positive impact on patients' lives, and to view the full clip of this featured story, please go to "Tablet app developed by UTHealth researchers helping epilepsy patients curb seizures."

(Posted March 9, 2014)

 

 

PEARLS Training: March 13-14, 2014 (Seattle, Washington)


PEARLS

Cost

Includes training materials and light refreshments

$445 per person before March 7
$495 per person after March 7

Accreditation

Receive 15.0 contact hours (optional) through the University of Washington School of Social Work


"Very effective, extremely knowledgeable, and engaging facilitators. The role play was valuable part of the training." - PEARLS Trainee

Register for PEARLS Training

PEARLS: Community-Based Depression Treatment
March 13-14, 2014
Seattle, Washington


Research studies have demonstrated that PEARLS is effective at reducing depression symptoms and improving the quality of life for individuals. An evidence-based behavioral treatment program, the PEARLS training focuses on two client populations: older adults and individuals with epilepsy. PEARLS is included in the Substance Abuse and Mental Health Services Administration's National Registry of Evidence-Based Programs.

Participation in a PEARLS depression treatment program for older adults was shown to be three times as likely as usual care to result in complete recovery from depression. In addition, adults with epilepsy receiving PEARLS were more likely to have reductions in depression and improvements in emotional well-being, as compared to usual care.

The goals of this training are to:

  • Learn the key elements of this multi-component program.
  • Effectively assess for depression.
  • Recognize psychosocial needs and stressors.
  • Recommend steps to improve clients' mental health and quality of life.
  • Gain practical skills

Research studies have demonstrated that the PEARLS approach is effective at reducing depression symptoms and improving the quality of life for individuals.

For more information, please go to www.pearlsprogram.org

(Posted February 3, 2014)

CDC PRC Brochure on the Managing Epilepsy Well NetworkMEW Network featured in CDC PRC Booklet

The CDC Prevention Research Centers (PRC) recently published a booklet featuring the research of the Managing Epilepsy Well Network. This brochure is available both in print and online in a PDF format.

To download a free copy of the CDC Prevention Research Centers MEW booklet, please go to :Managing Epilepsy Well: Putting Collective Wisdom to Work for People with Epilepsy
(File Size:4.6MB)

(Posted December 3, 2103)

 

Martha Sajatovic2013 'Hallway Conversation' Podcast on TIME is now available on Epilepsy.com

In this episode of Epilepsy.coms Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Martha Sajatovic, MD, Director, Neurological Outcomes Center, University Hospitals Case Medical Center about the Managing Epilepsy Well TIME Intervention.

 

 

 

Listen to the Epilepsy.com Podcast

(Posted September 27, 2103)

 

Barbara Jobst2013 'Hallway Conversation' Podcast on HOBSCOTCH is now available on Epilepsy.com

In this episode of Epilepsy.coms Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Barbara Jobst, MD, the Geisel School of Medicine at Dartmouth College of Medicine, about the HobScotch CDC Grant.

 

 

Listen to the Epilepsy.com Podcast

(Posted August 22, 2103)

MEW launches Epilepsy Self-Management Survey

Have you been diagnosed with epilepsy? Are you 18 year old or older? If you answered yes to these two questions, you might qualify to participate in a 20 to 25-minute epilepsy self-management survey.

Emory researchers are currently conducting a survey to understand how well people with epilepsy self-manage their condition.

This survey will help researchers to find better ways to assess how someone with epilepsy manages their condition. If you complete and submit the survey, you will  receive a $ 5.00 gift card to thank you for your time.

If you are interested, please visit us on the web at:

http://survey.emory.edu/fs-MEWSMS.aspx

This research is based at Emory University School of Public Health, Department of Behavioral Sciences and Health Education and is sponsored by the Centers for Disease Control and Prevention Epilepsy Program

Any questions? Contact us at:


Yvan Bamps, PhD
ybamps@emory.edu

OR

404-727-7043

(posted August 14, 2013)

 


PACES2013 'Hallway Conversation' Podcast on PACES is now available on Epilepsy.com

In this episode of Epilepsy.coms Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Robert Fraser, PhD, about the PACES Trial for Epilepsy- Helping Rural Communities deal with Epilepsy.

 

 

Listen to the Epilepsy.com Podcast

 

(Posted July 17, 2013)

 

#epilepsy #selfmanagement: The Managing Epilepsy Well Network is now on Twitter

The Managing Network has launched its official Twitter account. Follow @MEWNetwork for bi-weekly announcements about @MEWNetwork research and #epilepsy #selfmanagement. For more information please go to: https://twitter.com/MEWNetwork

(posted July 3, 2013)

 

 

Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Drs. Charles Begley and Corey Goldsmith about MINDSET: Management Information & Decision Support Epilepsy Tool

Listen to the Epilepsy.com Podcast

(Posted May 31, 2013)

 

 

 

Noreen ClarkEpilepsy.com 2013 Hallway Conversations on FOCUS on Epilepsy

Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Noreen M. Clark, PhD, Myron E. Wegman Distinguished University Professor, and Director, Center for Managing Chronic Disease, University of Michigan, and Mr. Russell Derry , Education Director of the Epilepsy Foundation of Michigan about FOCUS on Epilepsy: A Self-management Epilepsy Clinical Trial.

Listen to the Epilepsy.com Podcast

(Posted May 2, 2013)

 

 

Nancy ThompsonEpilepsy.com 2013 Hallway Conversations on Project UPLIFT

Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Nancy J. Thompson, Ph.D., M.P.H. from Emory University about the UPLIFT Depression and Epilepsy Self Management trial.

Listen to the Epilepsy.com Podcast

(Posted March 19, 2013)

 

 

Abstract on UPLIFT for Prevention of Depression receives the Rebecca Goldberg Kaufman Ethical Neuropsychiatry Award at the 66th Annual Meeting of the American Epilepsy Society

The PRC MEW Network’s abstract on UPLIFT for Prevention of Depression (click here to view full text )  was selected to receive The Rebecca Goldberg Kaufman Ethical Neuropsychiatry Award at the 66th annual meeting of the American Epilepsy Society (AES) in San Diego, California. The award serves to raise the consciousness of the importance of psychiatry in epilepsy care.UPLIFT Training

Depression is one of the most common psychiatric disorders among people with epilepsy. A review of studies shows that between 32% and 48% of people suffer from depression, impacting quality of life and family functioning more even than seizure frequency. Researchers from the Rollins School of Public Health of Emory University applied a revised version of a home-based treatment method that has been used successfully in the treatment of depression among people with epilepsy, known as Project UPLIFT, to test its effectiveness for prevention of depression. Among those who were recruited to participate, the incidence of major depression and depressive symptoms were significantly reduced, compared to treatment as usual.

This multi-site study was conducted under the lead of Nancy Thompson, PhD, MPH at Emory University with funding from the National Center for Minority Health and Health Disparities (NIH). Study participants were recruited from four Managing Epilepsy Well Network sites (Emory University , the University of Michigan, the University of Texas Health Science Center at Houston and the University of Washington ).

“UPLIFT is based upon mindfulness and cognitive therapy.  Our findings show that, using a preventive version of UPLIFT, we are able to prevent depression, reduce seizures, and improve quality of life—all at relatively low cost” said Nancy Thompson, the lead researcher of the study. “A further benefit is that the materials are delivered to individuals by telephone or Web, which reduces the health disparities for those with limited mobility or those living in rural areas” she continues.

(Posted December 7, 2012)

 

 


Managing Epilepsy Well Network awarded CDC SIP12-056 & 12-057 grantsMEW Network map

The MEW Network is pleased to announce that 2012-2013 CDC MEW Network awardees include: MEW Network Coordinating Center (SIP 12-056): Emory University; MEW Network Collaborating Centers (SIP 12-057): Case Western Reserve University ; Geisel School of Medicine at Dartmouth College, University of Michigan, University of Texas Health Science Center at Houston, and the University of Washington. With the inclusion of Case Western Reserve University and Geisel School of Medicine at Dartmouth College as new Collaborating Centers, the MEW Network has grown since 2007, from two to six collaborating sites.

Funded MEW Network projects for 2012-2013 include:


As the MEW Network enters its 6th year, the MEW centers will also focus their attention on the dissemination of evidence- and community-based programs for people with epilepsy. With CDC support, the MEW Network will continue to provide training opportunities to health and mental health care providers who are interested in implementing the PEARLS and UPLIFT programs to reduce or prevent depression in people with epilepsy.

Please visit our Projects page for more details about past and current individual projects.

(Posted November 27, 2012)

 

 

 

November is Epilepsy Awareness Month

November is designated as the official epilepsy awareness month.

  • If you are a person living with epilepsy or someone who provides care for people with epilepsy, consider viewing some of our Webinars on epilepsy self-management. In May 2012, the MEW Network has launched a Webinar Series on Epilepsy Self-Management to promote self-management to people with epilepsy and professionals who provide care and services to people with epilepsy. The latest installment in this Webinar Series, "Introducing WebEase: a Webinar for People with Epilepsy", is now available for viewing or download here.

  • In honor of Epilepsy Awareness Month, epilepsy is highlighted on Centers for Disease Control and Prevention (CDC)’s web site at http://www.cdc.gov/Features/EpilepsyAwareness/ with links to the MEW Network, the CDC Epilepsy Program and to First Aid tips..

  • The CDC Prevention Research Centers just published a feature article as part of their PRC Stories, This article focuses on the June 2012 WebEase launch and Dr. Colleen DiIorio’s retirement. Dr. DiIorio led the team of Rollins School of Public Health researchers in the development and testing of WebEase .

    You can read this article at:
     http://www.cdc.gov/prc/stories-prevention-research/stories/PRC_epilepsy_intervention.htm .

  • We also invite you to visit the 30 Days 30 Ways campaign page of the Epilepsy Foundation to see how you can get further involved in the epilepsy awareness month.

(Posted November 1, 2013)

 

 

 

Introducing WebEase: a Webinar for People With Epilepsy

Presented in partnership with the Epilepsy Foundation and the CDC Epilepsy Program. Special thanks to the American Epilepsy Society, to the Epilepsy Therapy Project and to UCB/Epilepsy Advocate for their assistance in promoting this event.

When: Tuesday, November 13, 2012, 2:00-3:00 pm (Eastern Standard Time)
Speakers: Sandra Helmers, MD, MPH (Emory University)

To register for this free event, please RSVP to Yvan Bamps (ybamps@emory.edu)

Space is limitedWebEase

WebEase (Web Epilepsy, Awareness, Support and Education) is an interactive, online self-management program for people with epilepsy. WebEase is different from other Epilepsy web sites because it does not tell you what you should do.  Rather, it guides you to think about what is important to you in managing your epilepsy through taking medications, managing stress and getting a good night’s sleep. WebEase is for anyone living with epilepsy and who is interested in improving their self-management skills regardless of where they are in life, or how long they have lived with epilepsy.

The goal of this Webinar is to give an overview of WebEase to people living with epilepsy or to the people who support someone living with epilepsy. We will review the benefits of the self-management and of WebEase. The Webinar will include a tour of WebEase main features, including the learning modules on medication, stress and sleep, and the personal epilepsy diary (MyLog).

In case you are unable to attend this Webinar, it will be recorded. Both the recording and the presentation slides will be available online for viewing and download.

"WebEase for People with Epilepsy" is part of the MEW Network Webinar Series on Epilepsy Self-Management.

For more information about this series, please go to the Webinars resource page

Epilepsy Foundation and Epilepsy Therapy Project Announce Merger to Create New National Organization


Washington, D.C., OCTOBER 4, 2012 -- The Epilepsy Foundation and the Epilepsy Therapy Project today announced an intention to merge. The new organization will have unparalleled reach and leadership through a nationwide supportive care network, broad-based public awareness, education and focus on accelerating the clinical development of innovative therapies for people with epilepsy. The Epilepsy Therapy Project will continue to work to accelerate new therapies in a timeframe that matters as the Epilepsy Therapy Project of the new Epilepsy Foundation.

"The reality we face today is that one-third of more than two million Americans living with epilepsy have no seizure control. A staggering one in 26 Americans will develop a form of epilepsy in their lifetime, and still epilepsy remains one of the most under-supported medical conditions in the nation. The coming together of the Epilepsy Foundation and the Epilepsy Therapy Project will create an organization with critical mass, energy and credibility," said Warren Lammert, co-founder of the Epilepsy Therapy Project and the father of a child with epilepsy. "Rather than building two competing brands and infrastructures, we will invest together to advance new therapies in a timeframe that matters and improve the lives of people with epilepsy."

The Epilepsy Therapy Project and Epilepsy Foundation together have provided funding to 42 of the 85 known drugs and devices in active development through an existing and successful partnership, resulting in the introduction of three new epilepsy products in the past year: the Visualase MR guided laser for minimally invasive epilepsy surgery, the SmartWatch seizure detection and caregiver alert device, and the Neurosis Monarch external Trigeminal Nerve Stimulation system for the adjunctive treatment of epilepsy.

"The Epilepsy Therapy Project has done an impressive job of uniting the clinical and research communities, advancing the epilepsy pipeline, and creating epilepsy.com - the foremost web site for professionals and consumers," said Brien Smith, M.D., Chairman, Epilepsy Foundation. "As one foundation, we have the opportunity to build an exceptional and highly focused organization - with the capability and expertise to make enormous strides in education, funding and the acceleration of new therapies."

"As a physician who treats many people with epilepsy, I am reminded daily of the desperate need for new and better therapies and scientific breakthroughs for those with no treatment options. When we created the Epilepsy Therapy Project, we faced the same need 10 years ago as today – to raise the level of funding in the nation and accelerate the development and commercialization of new therapeutics and diagnostics," said Orrin Devinsky, M.D., co-founder of the Epilepsy Therapy Project, Professor of Neurology, Neurosurgery and Psychiatry and Director of the NYU Comprehensive Epilepsy Center, New York University. "We need strength, synergy and unity to drive our mission moving forward. Once merged, the Epilepsy Therapy Project and the Epilepsy Foundation will focus scientific research and clinical medicine on the most important goal – new therapies, better control and a national call to action on behalf of everyone living with epilepsy."

The merging of the Epilepsy Foundation with the Epilepsy Therapy Project will create a unified organization driving education, awareness, support and new therapies for people and families living with epilepsy, bringing together the mission and assets of both organizations:

  • epilepsy.com, the leading portal for people, caregivers and professionals dealing with epilepsy;
  • 48 affiliated Epilepsy Foundations around the country dedicated to providing free programs and services to people living with epilepsy and their loved ones;
  • Scientific, Professional and Business Advisory Boards comprised of leading epilepsy physicians, health care professionals and researchers, industry professionals and investors with experience in clinical care, as well as in the evaluation and commercialization of new therapies;
  • A track record of identifying and supporting important new science, translational research programs, and the most promising new therapies;
  • The Epilepsy Pipeline Conference, a leading global forum organized in partnership with the Epilepsy Study Consortium that showcases the most exciting new drugs, devices and therapies, and includes the Epilepsy Shark Tank; and
  • A professional advocacy network focused on increasing epilepsy government and military funding and initiatives at the federal, state and local levels.



"When your child is first diagnosed with epilepsy, the fear, isolation and questions can be paralyzing," said Philip M. Gattone, President and CEO of the Epilepsy Foundation and the father of a child with epilepsy. "The new Epilepsy Foundation will be even stronger and more nimble in providing national leadership and support to the epilepsy community. By bringing together the resources of the Epilepsy Foundation with the Epilepsy Therapy Project and epilepsy.com, we will be able to reach all people with epilepsy - from the newly diagnosed to soldiers returning from war - and help them understand the condition, seek out the best treatment options and educate on scientific inroads and clinical trials. No one needs to feel alone in the fight against epilepsy."

The Boards of both organizations have agreed to a Memorandum of Understanding which, when executed, will result in the creation of a newly merged organization known as the Epilepsy Foundation. The plan will be for the organizations to be fully united by January 1, 2013.

For more Epilepsy Foundation news and announcements, please click here. The Epilepsy Foundation is a partner of the Managing Epilepsy Well Network.

(Posted October 10, 2012)

 

 

 

 

Registration opens for first session of the new Project UPLIFT Training Program Series (September 12, 2012-November 14, 2012)

UPLIFT Training

First Project UPLIFT Training
September 12-November 14, 2012
Every Wednesday
12:00 pm-1:00 pm (EST)

Space is limited

Who should attend?

  • Licensed mental health professionals from the 50 US states
  • Training is complete for: CA, CT, FL, MA, MD, ME, MI, MN, NH, NJ, NY, PA,TX, VA

Location and format

  • Phone training delivered in one-hour weekly sessions over a ten-week period

Registration fees & Materials

  • Registration is free
  • Registration includes CDs and manuals for the facilitator and participants
  • Continuing Education credits are available through the CDC

Upon completion of the program, trainees will be able to train future program facilitators without charge.

To Register:  please contact us at 404-712-9267 or e-mail us at uplift@emory.edu.


For questions, please call: 404-712-9267

 

Project UPLIFT is launching in September 2012 a Training Series for licensed mental health professionals. Project UPLIFT is an evidence-based home depression treatment program for people with epilepsy. With funding of the Centers of Disease Control and Prevention (CDC), Emory University will train at least one licensed mental health providers from all 50 US states to implement Project UPLIFT in their community and to train peer-facilitators in delivering Project UPLIFT to people living with epilepsy and depression.

Developed by Dr. Nancy Thompson with CDC funding, Project UPLIFT provides group delivery of depression treatment by telephone or through the Internet. Project UPLIFT uses Mindfulness-based Cognitive Therapy for Depression.1 Results of the pilot effectiveness study of Project UPLIFT found it to significantly reduce symptoms of depression among people in Epilepsy.2

Project UPLIFT is ready to be implemented by mental health professionals in communities across the US. Each trainee will receive instruction in both delivering Project UPLIFT treatment for epilepsy, and in training intervention peer-facilitators.

.Participants will receive all the materials necessary for their training and for the successful implementation of UPLIFT in their community. These materials include: CDs and manuals for the facilitator and for participants .Trainees who complete the program will be able to train future facilitators at no charge.

The first session of the Project UPLIFT Training Series is scheduled to start on September 12, 2012. Five additional sessions will be offered during the course of 2012-13. Sessions last 10 weeks and require attending a one-hour weekly class delivered by phone. Dr. Thompson will lead the training sessions of the participants. Successful participants will also receive Continuing Education (CE) credits from the CDC for their participation in all 10 training sessions.

 

To register now: contact us at 404-712-9267 or e-mail us at uplift@emory.edu.

 

 

 

1. Segal ZV, Williams JMG, Teasdale JD. (2002). Mindfulness-Based Cognitive Therapy for Depression: A New Approach to Preventing Relapse. New York: Guilford.
2. Thompson, N. J., Walker, E. R., Obolensky, N., Winning, A., Barmon, C., DiIorio, C., & Compton, M. T. (2010). Distance delivery of mindfulness-based cognitive therapy for depression: Project UPLIFT. Epilepsy & Behavior, 19, 247-254.

 

(Posted August 27, 2012/Updated February, 2 2013)

 

 

 

 

 

Webinar Introducing WebEase to health care and social service providers scheduled for September 18, 2012 at 12:00 pm (EST)

WebEase
WebEase for Health Care and Social Services Providers
Presented in partnership with the Epilepsy Foundation and the CDC Epilepsy Program

When: Tuesday, September 18, 2012, 12:00-12:45 pm (Eastern Time)
Speakers: Colleen DiIorio, RN, PhD, FAAN (Emory University) & Sandra Helmers, MD, MPH (Emory University)

To register for this free event, please RSVP to Yvan Bamps (ybamps@emory.edu)
Space is limited

WebEase (Web Epilepsy, Awareness, Support and Education) is the first interactive, online self-management program for people with epilepsy shown to be effective in improving self-management skills. WebEase was developed by a team of researchers from Emory University with funding from the Centers for Disease Control and Prevention, and is now available to the general public through the Epilepsy Foundation at www.webease.org . The purpose of this presentation is to provide interested epilepsy health care and social services providers with a brief overview of WebEase. In addition to exploring the benefits of WebEase for people living with epilepsy, the Webinar will review the structure and components of the program, its theoretical principles and its evidence base.

This Webinar will be recorded, and both the recording and the presentation slides will be available online for viewing and download. A Webinar introducing WebEase to people living with epilepsy and to their support person(s) is planned for mid-October

"WebEase for Health care and Social Services Providers" is part of the MEW Network Webinar Series on Epilepsy Self-Management.

For more information about this series, please go to the Webinars resource page.

(Posted August 8, 2010).

New online program to help epilepsy patients better manage their disorder now available at www.webease.org

Program Contacts: Sandy Helmers, MD, MPH (shelmers@emory.edu)

ATLANTA, June 28, 2012—Approximately two million Americans have epilepsy, a neurological diWebEase logosorder that produces seizures affecting a variety of mental and physical functions. Many people with epilepsy face major barriers accessing quality care.

Fortunately, Emory researchers have developed WebEase© (Web Epilepsy, Awareness, Support and Education), the first evidence-based, online, epilepsy self-management program. WebEase© is scientifically tested and shown to improve medication adherence, stress management, self-efficacy, sleep quality and social support in people with epilepsy.

“By providing access to WebEase via the Internet, we are able to break down barriers so that people with epilepsy can access and benefit from a scientifically tested program that can improve their health outcomes,” says current principal investigator Sandra Helmers, MD, MPH, associate professor of neurology and pediatrics at Emory University School of Medicine. “WebEase will be particularly helpful for those who have been recently diagnosed with epilepsy, or for those who are struggling with managing their medication, reducing their stress levels and improving their sleep.”

The program was released this week by the Epilepsy Foundation and was funded by the Centers for Disease Control and Prevention through their Prevention Research Center and Epilepsy Programs. WebEase© is scientifically tested and shown to improve patients' medicine adherence, stress management, confidence in managing their condition, sleep quality and social support..

WebEase was initially developed and tested under the leadership of Colleen K. DiIorio, RN, FAAN, PhD, professor, Rollins School of Public Health.  Dilorio collaborated with Cam Escoffery, PhD, MPH, CHES, Nancy J. Thompson. PhD, MPH, all of the the Rollins School of Public Health, and Frances McCarty, PhD, of Georgia State University. Helmers will manage the program’s continuing development.

WebEase consists of three core modules—medication, stress and sleep management. These modules are interactive, so participants can read information, respond to questions, receive tailored feedback, watch and listen to testimonials and learn proven strategies to assist them in setting personal goals to adopt healthy behaviors and to improve their epilepsy self-management.

Helmers, who treats patients with epilepsy, recommends the following tips for helping manage epilepsy:

  • Take your anti-epileptic (AEDs) medications every day, exactly as prescribed.
  • Avoid or modify things that trigger your seizures, such as lack of sleep or stress.
  • Have an open dialogue with your health care team on how to best manage your epilepsy.

To learn more about WebEase, visit https://www.webease.org/Overview.aspx

Related WebEase Publications:

DiIorio C, Escoffery C, McCarty F, Yeager KA, Henry TR, Koganti A, Reisinger E, & Wexler B. (2009). Evaluation of WebEase: an epilepsy self-management web site. Health Education Research, 24(2),185-197.
View PubMed Abstract

DiIorio C, Escoffery C, Yeager KA, McCarty F, Henry TR, Koganti A, Reisinger E, Robinson E, Kobau R, & Price P.  (2009). WebEase: development of a web-based epilepsy self-management intervention. Preventing Chronic Disease, 6(1), A28.
View PubMed Abstract
DiIorio C, Bamps Y, Escoffery C, Reisinger-Walker E (2011). Results of a Randomized Controlled Trial: Evaluating WebEase, an Online Epilepsy Self-Management Program. Epilepsy & Behavior, 22(3): 469-474.
doi:10.1016/j.yebeh.2011.07.030
View PubMed Abstract

(posted June 28, 2012)

 

 

 

 

 

Webinar on Epilepsy Self-Management Programs 101 for Epilepsy Foundation Affiliates (May 23, 2012)

The Managing Epilepsy Well Network (MEW)
in partnership with the
Epilepsy Foundation and the CDC Epilepsy Program

Presents as part of a Webinar Series on Self-Management:

Epilepsy Self-Management Programs 101
Wednesday, May 23, 2012
1:00-2:30 pm (EDT)

Self-management programs are recognized as important tools to help people with epilepsy control their seizures, minimize the effects of epilepsy and its treatment, and enhance quality of life. This webinar will focus on:

  • the difference between epilepsy self-management programs and epilepsy education programs;
  • the behavioral change theories that underlie and guide self-management programs;
  • MEW Network evidence-based self-management programs.

EF Affiliate staff and other epilepsy health care or social service providers interested in providing self-management programs to their communities are encouraged to attend.

To register for this free event, RSVP to Yvan Bamps
Space is limited. 

(Posted April 18, 2012)

 

 

PEARLS Training: A CDC-supported community-based depression treatment intervention for adults with epilepsy; September 27-28, 2012, Seattle, WA

PEARLS for Adults with Epilepsy is designed to treat major depression, minor depression, and dysthymic disorder in adults with epilepsy. As part of the CDC Managing Epilepsy Well Network, University of Washington investigators conducted a randomized control trial to test PEARLS in all-age adults with epilepsy. Findings suggest that compared with individuals who received usual care, individuals assigned to the PEARLS intervention achieved lower depression severity and lower suicidal ideation over 12 months (Ciechanowski et al., Epilepsy & Behavior. 2010 Jul 5. [Epub ahead of print]). 

Over the 2-day PEARLS Training session, participants receive state-of the art, in-depth training on the PEARLS approach and methods. Participants will learn to effectively assess for depression, recognize psychosocial needs and stressors, recommend steps to improve clients' mental health and quality of life, and gain practical skills .Participants will also understand the key elements and personnel required to effectively implement PEARLS in their communities.

Online registration opens July 2012 at www.pearlsprogram.org.

Contact:
Zandra Grissom
Program Assistant
Training Xchange, Center for Commercialization
University of Washington
206.685-9514
zgrissom@u.washington.edu 

Download PDF of brochureDownload program brochure:: PEARLS brochure

Who should attend? Physicians, nurses other health care providers of adults with epilepsy; Epilepsy Foundation Professional Advisory Board members and Epilepsy Foundation affiliate staff interested in implementing PEARLS in their communities.

  • Registration fee includes all training materials.
  • CEU credit is available.

(Posted May 2, 2012)

 

IOM Releases New Report - Epilepsy Across the Spectrum: Promoting Health and Understanding (March 30th, 2012)

Institute of MedicineDuring 2011, the Institute of Medicine (IOM) sponsored a consensus study that considered the public health dimensions of the epilepsies in the United States—including health care and human services, health literacy, and education. For this study, 24 federal agencies and nonprofit organizations came together with a vision for advancing the field of epilepsy and improving the lives of individuals with epilepsy by focusing this study on the public health dimensions of the disorder. Led by Dr. Mary Jane England, the study committee conducted three public workshops during which more than 80 researchers, experts, health professionals, and individuals with epilepsy and their families and friends provided presentations and testimony.

The resulting report, Epilepsy Across the Spectrum: Promoting Health and Understanding, makes recommendations ranging from the expansion of collaborative epilepsy surveillance efforts, to the coordination of public awareness efforts, to the engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved care and services.

The research activities of the MEW Network--including the PEARLS, Project UPLIFT and WebEase programs--are referenced and discussed in this report.

Read or download the IOM report

(Posted March 30, 2012)

 

Epilepsy Foundation Webinar on "Transitioning Children with Severe Epilepsy from School to Community, from Pediatrician to Adult Care" scheduled for Wednesday, April 18, 2012 from 3:00 pm to 4:00 pm (EST).

Join the Epilepsy Foundation for this interactive webinar on how to best transition your child with severe epilepsy from school to community, from pediatric care to adult care. Your questions and concerns will be addressed by a panel of experts. 

Please consider emailing any questions you would like considered for this presentation to  questionsforwebinar@efa.org.  
Panelists for this presentation include: 

  • Moderator, Dr. Joe Sirven, PAB Chair of the Epilepsy Foundation
  • Peter Camfield, M.D., Professor Emeritus, Department of Pediatrics, Dalhousie University,
  • Leslie Seid Margolis, Epilepsy Foundation National Board member and a managing attorney at the Maryland Disability Law Center in Baltimore, MD
  • Special guest - Kim SanInocencio, parent and advocate, LGS Foundation 

When: Wednesday, April 18 from 3:00 PM to 4:00 PM (EST)

This panel was made possible with a grant from Eisai, Inc. 

For more information or to sign up for the Webinar.

(Posted April 2, 2012)


MEW PEARLS and UPLIFT featured in the Fall 2011 issue of Epilepsy Advocate Magazine

A Fall 2011 Epilepsy Advocate article devoted to epilepsy and depression features Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) and PEARLS (Program to Encourage Active Rewarding Lives). To read this and other issues of the Epilepsy Advocate, or to download a PDF copy of the magazine articles, please go to:
http://www.epilepsyadvocate.com/epilepsy-support/article-archive.aspx (Fall 2011, Number 17 ),

(Updated January 30, 2012)

 

 

PEARLS and UPLIFT listed in DHHS's Inventory of Programs, Activities, and Initiatives Focused on Improving the Health of Individuals with Multiple Chronic Conditions

In September 2011, the US Department of Human and Health Services released the updated 2011 Inventory of Programs, Activities, and Initiatives Focused on Improving the Health of Individuals with Multiple Chronic Conditions in support of the DHHS Multiple Chronic Condition (MCC) Framework. This inventory provides basic information about 111 existing HHS programs for researchers, providers, and organizations concerned about improving the care of individuals with multiple chronic conditions. 

The MCC Framework comprises four major, overarching goals that support the Department’s vision for optimum health and quality of life for individuals with multiple chronic conditions. These goals are to:
1. Foster health care and public health system changes to improve the health of individuals with multiple chronic conditions
2. Maximize the use of proven self-care management and other services by individuals with multiple chronic conditions
3. Provide better tools and information to health care, public health, and social services workers who deliver care to individuals with multiple chronic conditions
4. Facilitate research to fill knowledge gaps about, and interventions and systems to benefit, individuals with multiple chronic conditions”

Both UPLIFT and PEARLS are identified as programs in support of Goals 1 & 2, respectively.

  • Information on UPLIFT, including the MEW UPLIFT for Prevention study is on page 27;
  • Information on PEARLS is on page 48

The Inventory can be viewed at:
 http://www.hhs.gov/ash/initiatives/mcc/mcc-inventory-20111018.pdf

(Posted October 31, 2011)

PEARLS

Program to Encourage Active Rewarding Lives (PEARLS)
Community-based Depression Treatment Training
November 7-8, 2011

Who should attend?

  • EF and EF Affiliate PAB & Executive Board Members
  • Healthcare providers who treat adults with epilepsy
  • Psychologists who treat adults with epilepsy
  • Social workers who assist people with epilepsy

Location

  • Epilepsy Foundation Office, 8301 Professional Place, Landover, MD

Registration fees & Materials

  • Registration includes course materials, continental breakfast, lunch & snacks
  • Registration is free, generously underwritten by a grant from UCB

Local Hotel Accommodations:

8330 Corporate Drive, Landover, MD 20785

9100 Basil Ct., Largo, MD  20774

*Conveniently located by DC Metro stations:
For Metro Trip Planner, click here .

To Register:  Please complete the PEARLS Registration Form and e-mail or Fax by Oct. 31 to:
e-mail: uwpearls@uw.edu
Fax:  206-744-9939 

PEARLS Registration Form

Download PEARLS Brochure and Training Agenda
For questions, please call:  206-744-1744

Developed with CDC Epilepsy Program support, PEARLS (Program to Encourage Active Rewarding Lives) for Epilepsy is a collaborative care intervention designed to treat major depression, minor depression, and dysthymic disorder in adults with epilepsy in their homes.

Delivered by a trained counselor in the client's home over 19 weeks, PEARLS consists of eight 50-minute sessions of problem solving treatment, behavioral activation, and psychiatric consultation followed by 3-4 follow-up phone calls. In a randomized controlled trial study, adults assigned to the PEARLS intervention achieved lower depression severity scores and lower suicidal ideation over 12 months than adults who received usual care (Ciechanowski, et al., 2010 ), with findings extending to 18-months (Chaytor et al., 2011 ).

Over the 2-day PEARLS Training session, participants will receive in-depth training on the PEARLS approach and methods. Participants will also understand the key elements and staff required to implement PEARLS in their communities. This will include an overview of technical support for data management, patient tracking, and program evaluation. Originally designed for older adults, PEARLS for Older Adults is being supported in collaboration with 25 different health and service providers in 9 states, providing opportunities for collaboration with the epilepsy community.

Who should attend?   EF Affiliate Professional Advisory Board members, epilepsy healthcare and social service providers, mental health providers and EF Affiliate Executive Board staff interested in supporting a PEARLS program in their communities.


The training session will be held at the Epilepsy Foundation office:  8301 Professional Place, Landover, MD.
Registration fees are generously underwritten by a grant by UCB

To Register:  Please complete the PEARLS Registration Form and e-mail or Fax by October 31, 2011 to:
e-mail: uwpearls@uw.edu
Fax:  206-744-9939 

PEARLS Registration Form

Download PEARLS Brochure and Training Agenda

 

 

 

 

 

(Posted September 22, 2011)

 

 

MEW Network Programs featured in the Epilepsy Advocate Magazine

A recent Epilepsy Advocate article devoted to clinical trials and epilepsy features the Managing Epilepsy Network and highlights two of its research studies: WebEase (Web Awareness, Support and Education) and Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts). To read this issue of the Epilepsy Advocate, or to download a PDF copy of the magazine articles , please go to:
http://www.epilepsyadvocate.com/epilepsy-support/article-archive.aspx (look for Summer 2011, Number 16),
or to:
http://www.epilepsyadvocate.com/includes/pdf/EA_Magazine_Summer_2011.pdf .

(Posted July 6, 2011)

 

 

Project UPLIFT Research Study for Depression Prevention

Project UPLIFT is a program designed for people with low mood.  The program is offered over the phone or the web and uses group therapy and mindfulness to help individuals manage their mood.  The program lasts for 8 weeks and is now looking for people with epilepsy who live in Washington state and are not yet fully depressed. Click here to read more about UPLIFT.

(Posted July 5, 2011)

 

PEARLS Agency for Health Care Research and Quality Innovation Profile

PEARLS (Program for Encouraging Active Rewarding Lives) was profiled on the Agency for Healthcare Research and Quality (AHRQ) Innovations Exchange web site . The program's description includes information on how PEARLS was expanded to serve adults with epilepsy and co-morbid depression.The PEARLS Toolkit is one of the QualityTools listed on AHRQ Innovations Exchange site. For more information, please go to:
http://www.innovations.ahrq.gov/content.aspx?id=2579
and
http://www.innovations.ahrq.gov/content.aspx?id=2613

(Posted April 11, 2011)

 

 

PEARLS: (Program for Encouraging Active Rewarding Lives): a community-based depression treatment program training to be held in Seattle, Washington: April 28 – 29, 2011.

Following Living Well with Epilepsy II, where priority recommendations addressed the mental health and quality of life needs of people with epilepsy, the CDC Epilepsy Program supported the development and evaluation of several interventions through the CDC Prevention Research Centers.

An evidence-based program, PEARLS is effective at reducing depression symptoms and improving quality of life for individuals with acute and chronic depression (Ciechanowski, et al., JAMA 2004). Adults with epilepsy and co-morbid depression receiving PEARLS were more likely to have reductions in depression and improvements in quality of life, as compared to usual care (Ciechanowski, et al., in preparation). PEARLS provides eight 50-minute sessions of problem solving and behavioral activation with a trained counselor in the client's home over 19 weeks.

The upcoming interactive training is open for medical and mental health providers as well as administrators who are planning to implement PEARLS in their community. Training includes didactic sessions, demonstration role-plays, and active skill-building, as well as seminars in understanding key elements and personnel required to effectively implement PEARLS.

Who should attend? Physicians, nurses, other health care providers of adults with epilepsy, Epilepsy Foundation Professional Advisory Board members, and Epilepsy Foundation affiliate staff interested in implementing PEARLS in your communities.

  • Registration fee includes all training materials.
  • CEU credit is available.

To Register, visit the web sites at http://www.pearlsprogram.org (select “register for PEARLS training” center left) or http://www.chammp.org/Training.aspx (select “register for training” on lower left).

If you have any questions, please contact Rosemarie Kobau at 770-488-6087 or for specific questions about the PEARLS training session, please call Eddie Edmondson at 206-744-1751.

(Posted February 14, 2011)

 

 

New Measures Help Improve Epilepsy Care

The American Academy of Neurology has developed quality measures to help measure and improve the care of people with epilepsy. These measures will be published in the January 4, 2011, edition of Neurology®. The measures, which are simple to implement and can easily improve epilepsy care, assess performance with regard to:
•    Seizure Type(s) and Current Seizure Frequency(ies)
•    Documentation of Etiology of Epilepsy or Epilepsy Syndrome
•    Electroencephalogram (EEG) Results Reviewed, Requested, or Test Ordered
•    Magnetic Resonance Imaging/Computed Tomography Scan (MRI/CT Scan)
     Results Reviewed, Requested, or Scan Ordered
•    Querying and Counseling about Anti-Epileptic Drug (AED) Side Effects
•    Surgical Therapy Referral Consideration for Intractable Epilepsy
•    Counseling About Epilepsy Specific Safety Issues
•    Counseling for Women of Childbearing Potential with Epilepsy
Members are encouraged to use the measures in their practices. The epilepsy measures also will be incorporated into a NeuroPI module for epilepsy, an AAN quality improvement tool that is designed to meet the Maintenance of Certification (MOC) Part IV PIP requirements mandated by the American Board of Psychiatry and Neurology (ABPN). The AAN recently introduced measures for Parkinson’s disease, and is working on developing measures in stroke and stroke rehabilitation, dementia, neuropathy, headache, and multiple sclerosis.
Learn more

(Posted January 2011)

 

 

 

MEW Research Featured in the November 2010 Issue of Epilepsy & Behavior

New research from CDC’s Managing Epilepsy Well (MEW) Network finds that community-based treatments and web-based tools can improve health outcomes in people with epilepsy.  The new studies have been published in the November 2010 issue of Epilepsy & Behavior, for Epilepsy Awareness month.

One of the most common neurological disorders, epilepsy affects about 2 million people in the United States.  Despite advances in treatment, many people with epilepsy continue to face difficulties managing their disorder, and they often struggle with depression and feeling isolated and stigmatized. MEW Network researchers found that a phone- and Internet-based depression treatment called UPLIFT (Using Practice and Learning to Increase Favorable Thoughts), significantly reduced depressive symptoms in adults with epilepsy. Another program, called PEARLS (Program to Encourage Active, Rewarding Lives), was found to ease depression symptoms in people with epilepsy through 8 home-visits by trained counselors.

“These studies are major breakthroughs in mental health treatment options for people with epilepsy, and they have the potential to significantly improve quality of life for many people struggling with this disorder,” explained Steven Schachter, MD, the journal’s editor-in-chief and a professor of neurology at Harvard Medical School.  

And there is more good news for people with epilepsy and their families. In the spring, MEW researchers and the national Epilepsy Foundation are planning to provide public access to an online epilepsy self-management tool called WebEase (Web Epilepsy Awareness Support and Education). “WebEase has been tested and was shown to improve people’s confidence and skills to better manage their epilepsy,” said Debbie Carr, Vice President, National Programs and Research, of the national Epilepsy Foundation. “We look forward to making this valuable tool available to people with epilepsy on our Web site.”

November’s issue of Epilepsy & Behavior also presents studies that examined how socioeconomic status may affect one’s ability to manage epilepsy as well as comments from interviews with national and international experts in chronic disease self-management. In a related editorial, the authors from CDC call on the epilepsy community to help spread the word about these new programs and to support them in their local communities “to help support and empower people with epilepsy to not just live well, but to thrive.”

Included MEW-related articles:

Kobau R, Price P, Giles HW, Pennell P, Hargis E: Forward/Editorial: Centers for Disease Control and Prevention Managing Epilepsy Well Network.

Begley CE, Shegog R, Iyagba B, Chen V, Dubinsky S, Newmark M, Ojukwu N, Friedman D: Socioeconomic Status and Self-Management in Epilepsy: Comparison of Diverse Clinical Populations in Houston, TX.

Ciechanowski P, Chaytor N, Miller J, Fraser R, Russo J, Unutzer J, Gilliam F: PEARLS Depression Treatment for Individuals with Epilepsy: A Randomized Controlled Trial.

Clark NM, Stoll S, Sweetman M, Youatt EJ, Derry R, Gorelick A: Fostering Epilepsy Self-Management: The Perspectives of Professionals.

DiIorio C, Bamps Y, Edwards AL, Escoffery C, Thompson NJ, Begley CE, Shegog R, Clark NM, Selwa L, Stoll S, Fraser RT, Ciechanowski P, Johnson EK, Kobau R, Price PH: The Prevention Research Centers' Managing Epilepsy Well Network.

Reisinger Walker E, Obolensky N, Dini S, Thompson, NJ: Formative and process evaluations of a CBT and mindfulness intervention for people with epilepsy and depression.

Thompson NJ, Reisinger Walker E, Obolensky N, Winning A, Barmon C, DiIorio C, Compton M: Distance Delivery of Mindfulness-based Cognitive Therapy for Depression: Project UPLIFT.

About Epilepsy & Behavior

Epilepsy & Behavior has been, and still is, the fastest-growing international epilepsy journal since its launch 10 years ago. Epilepsy & Behavior is uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy.

Epilepsy & Behaviorpresents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging.

(Posted November 2010)

 

 

Get Seizure Smart: November is Epilepsy Awareness Month

Get Seizure SmartNovember is National Epilepsy Awareness Month. The Epilepsy Foundation is launching a national campaign called: Get Seizure Smart. During the month of November, the Epilepsy Foundation is launching an interactive web site (http://www.getseizuresmart.org ) that provides educational materials and other resources to support this effort.

Many persons do not know how to respond appropriately to a person having a seizure. The campaign's goal, starting Monday, November 1, 2010 is to get one million Americans smart about seizure recognition, types and first aid.

The Epilepsy Foundation is mobilizing all its supporters and is asking them to get everyone they know to take the Get Seizure Smart quiz online, or download it and distribute it in schools, offices, fire departments, places of worship—any place in the community where information about seizures needs to be.

In addition to the online quiz and downloadable quiz at www.GetSeizureSmart.org , there are facts sheets , a Get Seizure Smart store (which will offer items at cost until October 31st!), a  video , Epilepsy Advocates , links  to the Epilepsy Foundation on Facebook , Twitter , eCommunities —and more.

(Posted October 29, 2010)

 

 

October is Health Literacy Month

Are you visiting your health care clinician or pharmacist? It is important to be prepared. Create a personalized list of questions that you can take with you. In recognition of the Health Literacy Awareness Month, we invite you to discover and use the interactive "Build Your Question List" provided by the Agency for Healthcare Research and Quality, and destined for patients with upcoming clinic appointments:
http://www.ahrq.gov/questionsaretheanswer/questionBuilder.aspx

(Posted September 23, 2010)

 

 

PEARLS Training: A CDC-supported community-based depression treatment intervention for adults with epilepsy; September 30-October 1, 2010, Seattle, WA

PEARLS for Adults with Epilepsy is designed to treat major depression, minor depression, and dysthymic disorder in adults with epilepsy.  As part of the CDC Managing Epilepsy Well Network, University of Washington investigators conducted a randomized control trial to test PEARLS in all-age adults with epilepsy. Findings suggest that compared with individuals who received usual care, individuals assigned to the PEARLS intervention achieved lower depression severity and lower suicidal ideation over 12 months (Ciechanowski et al., Epilepsy & Behavior. 2010 Jul 5. [Epub ahead of print]). 

Over the 2-day PEARLS Training session, participants receive state-of the art, in-depth training on the PEARLS approach and methods. Participants will also understand the key elements and personnel required to effectively implement PEARLS in their communities.


For more information on PEARLS, including training registration, please visit: http://www.pearlsprogram.org

Who should attend? Physicians, nurses other health care providers of adults with epilepsy; Epilepsy Foundation Professional Advisory Board members and Epilepsy Foundation affiliate staff interested in implementing PEARLS in their communities.

  • Registration fee includes all training materials.
  • CEU credit is available.

(Posted September 7, 2010)

 

 

Epilepsy Foundation Web pages commemorating the Americans with Disabilities Act (ADA) Anniversary

On July 26 2010, the Epilepsy Foundation joined its partners in the disability, health, and civil rights community in a celebration of the 20th Anniversary of the Americans with Disabilities Act (ADA).  Foundation leadership and advocates from across the country joined in many events that recognize 20 years of the ADA.  In Washington, the White House and congressional leadership hosted events and hearings recognizing the importance of the ADA. 

One historic moment that took place on the 26th was that Representative James Langevin (D-RI), the Congress’ only member with a physical disability (spinal cord injury), and co-chair of the House’s Bipartisan Caucus on Disability, presided over the House floor as Speaker. This was historic in that the physical environment was adapted so that Rep. Langevin, who uses a wheelchair, was able to roll to the podium and be lifted in his chair to sit where the Speaker traditionally sits. Majority Leader Steny H. Hoyer commented that while Representative Langevin may be the first member to use the new technology that allows him to rise to the Speaker’s position, he will not be the last.

The Epilepsy Foundation has launched a web page to honor the 20th anniversary of the Americans with Disabilities Act.  Included on this page are historical documents and resources on the ADA and the ADA Amendments Act of 2008.  Also included are videos, a timeline of the ADA, and copies of the Epilepsy Spokesman articles about the passage of the law from 1990.

http://epilepsyfoundation.org/advocacy/ada_restoration/celebrating-20-years-of-ada.cfm

(Posted July 28, 2010)

 

 

University of Michigan's Center for Managing Chronic Disease Key Informants’ Perspectives on Managing Epilepsy Report released

Managing Epilepsy Well Network member the Center for Managing Chronic Disease, University of Michigan, released a detailed report on the perspectives of 101 national and international thought leaders representing clinical, academic, and human service organizations providing care to people with epilepsy. Their views draw a compelling and challenging picture of epilepsy and the potential for more effective management of the condition. Dominant themes that emerged from the telephone interviews are described and illustrated with direct quotations, and the report includes findings from analyses of significant differences in responses by respondent type. 

Download the report: Key Informants’ Perspectives on Managing Epilepsy Report

(Posted March 26, 2010)

 

 

 

PEARLS Training (April 8-9, 2010, Seattle, WA)

PEARLS Training, April 8-9, 2010 Seattle Washington PEARLS Training, April 8-9, 2010 Seatte Washington

PEARLS investigators, counselors, and administrative staff provided an overview of the program including findings from two randomized trials—one in older adults and one in adults with epilepsy. Participants learned about the foundation of PEARLS as a collaborative-care program that includes roles for the patient, their physician, and a mental health care provider.  Participants also learned about the benefits of problem-solving treatment, behavioral activation, and pleasant-events scheduling as effective skill-building therapies for reducing depressive symptoms and as supplements to medication when necessary.  PEARLS staff also described the resources needed to implement PEARLS in a local community.  Attendees participated in a number of role-plays to apply the PEARLS methods in practice sessions.

(Posted April 13, 2010)

PEARLS Training, April 8-9, 2010 Seattle Washington PEARLS Training, April 8-9, 2010 Seattle Washington

 

 

 

 

Networking Helps People with Epilepsy Avoid Depression

Read about the research conducted by the members of the Managing Well Network on epilepsy self-management and depression prevention in December 2009 CDC PRC's Stories of Prevention Research article: Networking Helps People with Epilepsy Avoid Depression. (Posted December 3, 2009)

 

 

Charles E. BegleyCharles E. Begley Appointed to Global Epilepsy Task Force

Dr. Charles Begley, Managing Epilepsy Well Network member, has been appointed as the North American representative on the Global Campaign Against Epilepsy Task Force.  The "Global Campaign against Epilepsy: Out of the Shadows" was launched in 1997 as a joint project of the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE) and the World Health Organization (WHO). Its mission is to improve the acceptability, treatment services and prevention of epilepsy worldwide.  Read more about it in the November 13, 2009 ASPH Friday Letter . (Posted November 23, 2009)

 

 

 

November is Epilepsy Awareness Month

In 2003, the U.S. Congress passed a formal resolution declaring November as National Epilepsy Awareness Month. Keeping with this tradition, the Epilepsy Foundation has launched a new national campaign to raise epilepsy awareness in the United States to continue its  ongoing educational mission. Talk About It!, this year’s National Epilepsy Awareness Month theme, will empower people with epilepsy to dispel myths and encourage the public to better understand the condition. We encourage you to explore our resources pages to find out more information about the Epilepsy Foundation and our other partners. In partnership with the Epilepsy Foundation, the Centers for Disease Control and Prevention's has also started a First Responders Training Program aimed at increasing recognition of seizures by law enforcement and emergency response personnel. You can read more about Epilepsy Awareness Month here. (Posted November 9 ,2009)

 

 

UPLIFT NIH Challenge Grant: Preventing Depression in People with Epilepsy: An Extension of Project UPLIFTUsing Practice and Learning to Increase Favorable Thoughts

Emory University was awarded an NIH Challenge Grant to fund a multi-site depression prevention intervention in people with epilepsy. Funded through the National Center for Minority Health and Health Disparities, this study involves the four Managing Epilepsy Well Network sites (Emory University, University of Michigan, University of Texas at Houston, and University of Washington)

The study builds on the success of the CDC-funded Project UPLIFT (Using distance technology for treating depression in people with epilepsy), and expands its scope to include prevention of depression in people with epilepsy. Participants in the study will be recruited from Georgia, Michigan, Texas and Washington State. This intervention prevention study is expected to last for 2 years. Please visit the "Preventing Depression in People with Epilepsy" project page for more details or contact Ariele Edwards, MSPH, CHES, for more information. (Posted October 7 ,2009)

 

 

Managing Epilepsy Well Network awarded CDC SIP 09-2011 grant

All current Managing Epilepsy Well centers were awarded renewed funding through a CDC Special Interest Program grant (SIP 09-2011). Funded MEW Network projects for 2009-2011 include:

  • Applying effective components of chronic disease self-management models to enhance self-regulation and social support in adults with refractory epilepsy (University of Michigan)
  • A needs assessment and development of a consumer-generated epilepsy self-management intervention (University of Washington)
  • Development and pilot testing of a clinic-based decision-support system to enhance self-management behavior (University of Texas at Houston)
  • A multi-site depression prevention intervention in people with epilepsy (all MEW Network Sites)

Emory University will remain the coordinating center for 2009-2011. Please visit our Projects page for more details about individual projects. (Posted October 7 ,2009)

 

 

MEW Network