SUDEP Institute January Update
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Epilepsy Foundation SUDEP Institute

As we head into the new year, many of us develop New Year’s Resolutions. The most common resolution is to stay fit and healthy. As we make these goals around health it is important to remember our mental health. Linda’s article below provides some tools to help reflect on and adapt to our grief. Our #DareTo Say SUDEP story comes from an Olympic athlete who shares why SUDEP is a risk all people with epilepsy need to consider, even when they feel healthy and strong.

If one of your resolutions is to become more active in SUDEP awareness efforts, you will discover several opportunities below. The SUDEP Institute team is busy developing resolutions for the next three years. We look forward to working with all of you to find ways to predict and prevent SUDEP and support all families impacted by SUDEP.

Cyndi Wright
Director, Epilepsy Foundation SUDEP Institute

New Year is a Time to Reflect and Adapt

In this month’s article, SUDEP Institute Bereavement Care Counselor Linda Coughlin Brooks, RN, BSN, CT, provides ideas for coping with re-grief.

It is a New Year. The calendar pages have turned to 2016. It is common among grieving people to question, “How do I move forward into a new year?” Many describe the cascade of emotions and feelings; most don’t include the adjective “happy.” The flood of memories associated with your loss may have been intensely triggered by the holiday season. This is common in newly bereaved persons as well as seasoned grievers. 

It is common to feel your loss more acutely from time to time. The roller coaster of emotions often becomes the new normal. What changes is one’s ability to ride the waves with greater confidence using the tools learned in grief work. Read more for ideas on how we can reflect and adapt to cope with re-grief.

#DareTo Say SUDEP

This month our #DareTo Say SUDEP story comes from Chanda Gunn, Athletes vs Epilepsy Ambassador and Olympic Ice Hockey Medalist. 

I've spoken about my epilepsy publicly, in many arenas, across the country. I’ve attended several conventions and been invited to camps, schools, and universities relating to athletes, children, parents...

I was diagnosed with Epilepsy after having petit mal (absence) seizures. They progressed to grand mal (generalized tonic-clonic) seizures and were under control with treatment for almost 14 years. One day, without warning, they came back, and I've struggled a little bit ever since. Every 3 months or so. Anytime I'm up a little too late. Or if, God forbid, I forget my medicine.

It is scary, inconvenient, and embarrassing, but the moral of the story is always that I keep going and, in between seizures, I do great. I consider myself happy and successful. I'm very healthy. I follow a low glycemic index diet as part of my treatment, exercise regularly,...

Because of my involvement with Athletes vs Epilepsy, I am well informed when it comes to what SUDEP is. I've heard devastating stories of losing loved ones. To me, stories of people passing in their 40s are just as horrible as losing a 4 year old. But it was never something that could happen to ME. Read more of Chanda’s story and how she came to understand her risk for SUDEP.

Please share our #DareTo Say SUDEP infographic with people touched by epilepsy. You can share it on your Facebook page, tweet a link, pin the infographic on Pinterest, post a link on your website, or email a link to family and friends. Let’s get the word out and #DareTo Say SUDEP. Do you want to write a #DareTo Say SUDEP article or letter? Let us help you.  

Third SUDEP Challenge: Predictive Biomarkers of Epilepsy Seizures 

Determined to bring an end to SUDEP and help people with seizures live to their fullest potential, the SUDEP Institute will be challenging Solvers worldwide to identify biomarkers to predict and prevent SUDEP. Combined prizes for the final two challenges will be over $1 million. We will launch the third challenge at the end of February and the final challenge will follow. Anyone can be a part of the SUDEP Challenge Initiative; even if you don’t enter the challenge, we encourage you to promote the challenge or donate toward the $1 million prize.

We hope to publicly announce the winner of our Second Challenge: Preventing Epilepsy Seizures in the coming weeks. We are very excited about the winning solution and just need to work through some legal agreements before we can make an official announcement and award the $30,000 prize.

SUDEP Research News 

Epilepsy is associated with a high rate of premature mortality from direct and indirect effects of seizures, epilepsy, and antiseizure therapies. SUDEP is the second leading neurologic cause of total lost potential life-years after stroke, yet SUDEP may account for less than half of all epilepsy-related deaths. Despite clear evidence of an important public health problem, efforts to assess and prevent epilepsy-related deaths remain inadequate. Read more of Dr. Devinsky’s call to action, which includes information on factors contributing to the underestimation of SUDEP and other epilepsy-related causes of death and recommendations to improve surveillance.

The SUDEP Institute has always been committed to improving SUDEP Surveillance. Learn about our current efforts and encourage the death investigators in your community to participate in our free webinar, "Investigating Death in Epilepsy Patients." If you have not already participated in the North American SUDEP Registry, we encourage you to register today.

Team SUDEP at the National Walk

Join Team SUDEP at the National Walk for Epilepsy. If you can't join us on Saturday, April 16, 2016, in DC, you can still honor your loved one by supporting Team SUDEP and emailing us so we can decorate a rembrance flag in honor of your loved one. We place the flags on our Remembrance Wall. In past years this display was not only beautiful– it was a gathering place for families to connect, share stories, and offer support. 

Another way to honor your loved ones and raise awareness is the SUDEP Remembrance Pages. We hope you will create a memorial webpage. 

Let Us Help You Keep Connected

If you ever find you, a family member, or a friend need support or information about death in epilepsy, please do not hesitate to email or call 800-332-1000 and press 1. You can also join our Bereavement Support Group to connect with other families bereaved by epilepsy. If you are not already getting the weekly newsletter, you can sign up here.

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