The SUDEP Institute is incredibly appreciative of our partners' support and proud of the progress we have made together. Read our updates below for more information on our impact.
Spring 2015 Update
2015 has already been a busy year. We are so proud of the progress we have made, the new initiatives we are leading and the services we are now offering.
#DareTo Say SUDEP Infographic
In March 2015 we released our new #DareTo Say SUDEP Infographic. We have had an amazing response to our Managing Epilepsy and Seizures Infographic and were able to provide information on the serious risks associated with epilepsy as well as how to manage those risks. This year we decided to take it to the next level with an infographic dedicated to SUDEP. Through a partnership with Lundbeck, we are able to distribute this nationwide through neurologists offices and our affiliate network. View and share the infographic with your community. We are optimistic that this will improve both the quality and quantity of conversations about SUDEP.
#DareTo Say SUDEP Campaign Continues
We are incredibly grateful to the families who are willing to share their stories to help build awareness for SUDEP. Read their powerful stories.
SUDEP Challenge Initiative
On April 10th, the SUDEP Institute hosted a SUDEP Challenge Workshop. We have partnered with InnoCentive to create three SUDEP Challenge Competitions. InnoCentive crowdsources innovation problem solving to their over 350,000 solvers world-wide. We pulled together an amazing team of epilepsy and SUDEP experts for this workshop and began developing three challenges around SUDEP.
Beginning this summer we will be awarding more than $1 million for a series of at least three prize challenge competitions. The first challenge, worth $15,000, launched in June was looking for creative and viral advocacy campaign submissions that inform and educate patients, families, and the health care community and are aimed at a change in behavior that leads to better seizure control and freedom, therefore reducing SUDEP risk. The second challenge will focus on developing an intervention to help people with epilepsy comply with treatment plans and decrease the risk of seizures, and the final challenge will be focused on determining the physiological pathways that lead to death and identifying a target for intervention. Learn more about the SUDEP Challenge Initiative.
$50,000 SUDEP Research Grant Awarded
This spring we awarded our $50,000 Targeted Research Initiative for Morbidity and Mortality in Epilepsy Grant to Gordon Buchanan, M.D., Ph.D. of the University of Iowa for his research into “Norepinephrine & Serotonin in Seizure-induced Respiratory Arrest and Death”. Learn more about this Grant program.
Investigating Death in Epilepsy Patients Webinar
Recognizing and accurately reporting epilepsy mortality is a critical step in understanding the causes and how to prevent epilepsy related deaths. To address this, we developed the Investigating Death in Epilepsy Patients Webinar. This unprecedented partnership led by the SUDEP Institute brought together all national death investigation organizations as well as the CDC, NIH, and the North American SUDEP Registry. Continuing Medical Education credit was provided by NYU School of Medicine. Post webinar evaluations demonstrated increases in knowledge of epilepsy mortality, awareness about how to accurately perform death scene investigations and autopsies, and understanding about how to fill out the death certificate so epilepsy deaths can be tracked. Share this free webinar with death investigators in your community.
Monthly SUDEP Bereavement Support eNewsletters
Beginning in January we began sending monthly enewsletters to families in our bereavement support program. These newsletters include an article by Linda Coughlin Brooks', RN, BSN, CT that cover topics that are important to many bereaved families. Read these articles and learn more about our other bereavement support programs.
Remembrance Wall at the National Walk for Epilepsy
Thank you for joining the SUDEP Institute at the National Walk for Epilepsy and sharing photos and the names of your loved ones so we were able to honor them on our Remembrance Wall. The Wall was incredibly moving. View all the photos including individual flags and a video of the wall. We would like to thank the Danny Did Foundation for being a sponsor.
Fall 2014 Update
It is hard to believe Fall is already here. We had a busy summer with the Partners Against Mortality in Epilepsy (PAME) 2014 conference. Devoted predominantly to SUDEP, this conference brought together doctors, scientists, families and advocates from around the world to advance awareness and understanding of epilepsy mortality and SUDEP. Read the summary to learn about this incredible event. The epilepsy Foundation was proud to be a sponsor of this important conference.
SUDEP Resource Guide
This summer we began distribution our SUDEP Bereavement Guide. This 114 page guide provides helpful tools and information. In addition to facts and articles on SUDEP, the guide also offers information on how to navigate the death investigation process and how to participate in research. Another section is devoted to understanding grief. There are also tools and resources that may be helpful after the loss of a loved one. The response to this guide has been incredible. Families are very appreciative for the information and support. Learn more about our resources for bereaved families.
#DareTo Say SUDEP Campaign
In November, the Epilepsy Foundation launched their #DareTo Campaign. We we are so grateful to the Nowotenski Family who wrote a powerful letter in honor of their son Russell which dares doctors to talk about SUDEP. Read their letter.
The SUDEP Institute helps keep families connected with other families as well as with medical professionals who can benefit from hearing their story. Learn about our #DareTo Say SUDEP campaign and how by sharing stories with medical professionals and people with epilepsy we are building awareness and increasing understanding for SUDEP. By daring to say SUDEP people are inspired to do everything they can to protect people with epilepsy and try to prevent this tragic outcome.
We have two exciting initiatives we will be launching in the spring. We will be hosting and Investigating Death in Epilepsy Patients Webinar which will help us education death investigators so we can improve SUDEP surveillance. We will also be launching our new SUDEP Infographic. Like our Managing Epilepsy and Seizures Infographic, this will include key facts as well as provide information on what families can do to decrease the risk of SUDEP.
Spring 2014 Update
It is hard to believe the SUDEP Institute launched just over a year ago. We are incredibly appreciative of our partner's support and proud of the progress we have made together. Below is an update on several of our programs. We have also started including updates from our partner organizations so they can share the status of their SUDEP efforts.
If you have not already, we encourage you to check out the new epilepsy.com launched in conjunction with the National Walk for Epilepsy in Washington, DC. We have expanded the SUDEP section and will be continually adding more content and information to the site.
Managing Epilepsy and Seizures Infograpic
In November 2013, the SUDEP Institute launched the Managing Epilepsy and Seizures Infographic. This infographic was distributed in tear sheet pads to neurologists and people living with epilepsy nationwide. All feedback has been unanimously positive. Ninety percent of neurologist surveyed found the infographic extremely or very helpful. In the first two months the infographic had been viewed over 100,000 times through social media efforts. The infographic was also showcased at the London Brain Project Art Exhibit in March.
Due to popular demand are now distributing this infographic in a poster version. View the infographic online and download copies.
CME Webinar - Talking About SUDEP: Different Conversations for Different Situations
The SUDEP Institute partnered with the American Epilepsy Society and hosted a two-part webinar series titled “Talking About SUDEP: Different Conversations for Different Situations.” The webinars were hosted in Februay and participants were offered 3 CME and CNE credits. The webinar will soon be available for download from the AES website.
CEU Webinar: Epilepsy Mortality and Complicated Grief
Hosted by Linda Coughlin Brooks and Katherine Sheer, this webinar is targeted at grief counselors, therapists, social workers, and advocates. It will explain how epilepsy-related deaths often present unique challenges and will prepare participants to offer the support bereaved families need.
This webinar will be hosted May 21, 2014 through a partnership with the Association for Death Educators and Counselors. Learn more and register.
In addition to providing training for the Foundation's national and affiliate staff on how to respond to calls regarding SUDEP, we have hired Linda Coughlin Brooks, a certified thanatologist who is also bereaved by SUDEP. Families have reported connecting with Linda to be helpful and healing. As Linda has also been actively engaged in SUDEP surveillance efforts, she can support families through the often long and difficult death investigation process process as well as encourage families to participate in North American SUDEP Registry and Ion Channels in Epilepsy Study.
Remembrance Flags at National Walk
For the first time, the National Walk for Epilepsy distributed flags to remember of those lost to epilepsy. This allowed families an opportunity to honor their loved one as well as help build awareness. We also had a SUDEP booth where we decorated flags, provided information on SUDEP and Linda Coughlin Brooks provided support to families. We distributed the infographic and our SUDEP Resource Sheet with contact information for all our partners. Thank you to the Danny Did Foundation for sponsoring our remembrance area.
Improving SUDEP surveillance is critical to our mission and an initial step is to determine how cases are currently being recorded. We surveyed members of the National Association of Medical Examiners (NAME) and asked them to complete death certificates for what neurologists would consider SUDEP cases. The results of this effort will be presented at the NAME and AES annual conferences.
We are also encouraging our national affiliate network to build relationships and educate their death investigator community on SUDEP and epilepsy mortality surveillance. We will assist each affiliate in developing power point presentations and materials which they can utilize as part of this education effort.
Many families find the process of sharing their story and alerting others to the risk of SUDEP healing. The SUDEP Institute developed a template SUDEP feature news release so affiliates can easily share SUDEP stories in their region. A SUDEP Backgrounder was also developed to ensure consistent and accurate information is shared with the media.
We also partnered with the Buisman family to create a SUDEP Public Service Announcement that has received print, television, and social media attention. View the PSA.
Fall 2013 Update
Making Progress to Build Awareness for SUDEP (Sudden Unexpected Death in Epilepsy)
Much progress has been made since the Epilepsy Foundation SUDEP Institute was launched six months ago.
In February 2013, the SUDEP Institute hosted a kick-off meeting to get feedback and suggestions on how the Institute could best address gaps in three focus areas: education and awareness, research and supportive care. Learn more about the meeting and the resulting three-year plan.
So far, the SUDEP Institute has accomplished the following:
- Updated the SUDEP content in print publications, on www.epilepsy.com, and through partners like the Managing Epilepsy Well Network
- Supported SUDEP Legislation, which has now been signed into law in New Jersey and Illinois.
- Hosted a SUDEP Surveillance Workshop to determine best practices and build awareness of SUDEP in the death investigation community.
- Lead development and management of the Partners Against Mortality in Epilepsy (PAME) Webinar Series.
- Developed a seizure safety infographic that empowers people to best manage epilepsy and decrease the risk of SUDEP and other serious outcomes associated with epilepsy. This infographic has been made available online and in neurologist offices across the country.
- Partnered with the "Making Sense of SUDEP Campaign" to make a series of SUDEP brochures available for free download or through our Epilepsy Foundation affiliate network.
In the upcoming months, the SUDEP Institute plans to:
- Partner with American Epilepsy Society to expand SUDEP training for medical professionals through a two-part webinar and improvement of professional educational materials online.
- Continue to support SUDEP surveillance efforts through the development of death investigation protocols and training, support of SUDEP legislation and policies, and the promotion of registries.
- Expand and improve Epilepsy Foundation support services around SUDEP through dedicated support staff, online communities, and strategic partnerships.
- Raise visibility of SUDEP through professional publications and meetings, as well as regional and national media.
SUDEP Institute Kick Off February 2013
On February 26, 2013 the SUDEP Institute of the Epilepsy Foundation hosted a full day meeting to get feedback and suggestions on how the Institute can best unite and support existing SUDEP efforts. The objective was to determine how to best address gaps in three focus areas: education and awareness, research and supportive care. The meeting included representatives from: NIH/NINDS, CDC, AES, AAN, CURE, Danny Did, SUDEP Aware, Epilepsy Bereaved, Epilepsy Australia, ICE Alliance, Dup15q Alliance, Dravet Syndrome Foundation and Lennox-Gastaut Syndrome Foundation. Attendees also included neurologists, nurses, researchers, medical examiners and families.
The meeting was incredibly productive and can be summed up well by this quote from a participant:
“Thank you so much for including me in the meeting yesterday. I have renewed energy and please know that I will work with the SUDEP Institute to for whatever is needed. The great work that has been done so far is very impressive. The unselfish passion of this group on behalf of persons with epilepsy is amazing.”
Below please find highlights of next steps for the SUDEP Institute based on the feedback from the Kick-Off meeting. The goal is to initiate activities within the timeframe noted. All efforts will be done in a collaborative way and we will involve and engage our partners as appropriate. Funding for these efforts will come from multiple sources including partner organizations, corporate and individual contributions. Results will be dependent on obtaining the resources required.
Goals for 2013
Initiate conversations to include SUDEP as part of basic epilepsy education and Epilepsy Quality of Care Guidelines
Host Medical Examiner and Coroner workshop to determine best practices and build awareness of SUDEP in the death investigation community
Update Epilepsy Foundation online and print materials to include current information on SUDEP
Expand and improve Epilepsy Foundation support services around SUDEP, both online and through support staff.
Consolidate and publish all research and funding opportunities in SUDEP on epilepsy.com
Support and promote SUDEP Registries
Goals for 2014
Support and promote SUDEP Guidelines as presented by the American Academy of Neurology and the American Epilepsy Society
Develop SUDEP training for medical professionals including medical examiners and coroners
Begin to work with partners to set a research agenda, define gaps and roles.
Raise visibility of SUDEP through professional publications and meetings, as well as in regional and national media.
Continue to expand online, print and phone services around SUDEP.
Continue to work to get SUDEP autopsy protocols in more states/regions.
Goals for 2015
Continue to offer SUDEP training for medical professionals including medical examiners and coroners
Continue to expand online, print and phone services around SUDEP.
Continue to raise visibility of SUDEP through professional publications and meetings, as well as in regional and national media.
Develop SUDEP specific Grant Program
Build awareness and participation in registry and epilepsy mortality research.
Continue to work to get SUDEP autopsy protocols in more states/regions.
To learn more about the plans of the SUDEP Institute or to find out how you can help, please contact firstname.lastname@example.org
by Cyndi Wright
Director, Epilepsy Foundation SUDEP Institute