This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!
Greetings from Washington DC
I am heading to the 2016 Partners Against Mortality in Epilepsy Conference (PAME) to cover the event for SUDEPAware. The event is meant to increase understanding of mortality in epilepsy—particularly Sudden Unexpected Death In Epilepsy (SUDEP)—by bringing together clinicians, researchers, public health officials and people who have epilepsy and their families/caregivers.
The PAME partnership is led by the American Epilepsy Society (AES), Citizens United for Research in Epilepsy (CURE) and the Epilepsy Foundation (EF). The 2016 PAME conference is the third biennial meeting hosted by the AES and planned by the PAME partnership.
This year the conference is being held in Alexandria, VA, just outside of Washington DC and I am thrilled to have the opportunity to attend this event, which blends families, researchers, and industry all in one event.
A day in the life
People often ask what it is like to blog about epilepsy. I thought it might be fun to share my schedule for the first day of the conference.
It’s truth time. I hate mornings. I wish I was one of those people who woke up bounding with energy every morning. The reality is my husband gets up and brings me a hot cup of coffee every morning. I’m useless without that first cup. After a sip or two, I’m able to open my eyes and the first thing I do is check my site. I take a peek at the site traffic, then I respond to Twitter notifications, visit Facebook and finally respond to comments.
Since I’ll be getting on the road I’ll need to make sure my phone, computer, cords, extra battery, camera are all packed and ready to go. Oh, and I can’t forget my meds, my tea, my snacks, and my sneakers since I’ll be in the DC area for a few days. I use all kinds of tricks to deal with memory issues and side effects. For example I’ll use one of the many whiteboards in the house to keep a list of what needs to come with me to DC.
Next I will pack up the car. Once I’m sure I’ve got everything, I’ll throw on some makeup and get ready for my first meeting before I even get on the road.
Meet with a colleague at a local coffee shop to chat about innovative neurology projects in the pipeline.
Get on the road to DC and keep my fingers crossed for light traffic.
Text my family to let them know I arrived safely.
Meet with the staffs of Senator Cory Booker and Senator Robert Menendez to discuss the importance of neurology research and the impact epilepsy has on public health.
Check in to PAME hotel and conference.
PAME Families Meeting will be an opportunity to meet with co-chairs, Jeff Buchhalter, MD, PhD, of Alberta Children’s Hospital and Gardiner Lapham, RN, MPH of Citizens United for Research in Epilepsy (CURE); Elizabeth Donner, MD, FRCPC of The Hospital for Sick Children; George Richerson, MD, PhD, of the University of Iowa; Tom Stanton, MPP of Danny Did Foundation; and Cyndi Wright of SUDEP Institute. This meeting will offer a primer on SUDEP.
The day will end with a welcome reception with remarks by the conference committee and Walter Koroshetz, MD, Director of the National Institutes of Neurological Disorders and Stroke (NINDS).
After the reception I will head back to my room and thank my lucky stars for my snacks and my tea. I’ll climb into my pj’s to call my husband and daughter. I’ll pretend to watch television for a bit while I respond to any emails and notifications on Twitter and Facebook. Finally, I will double check to make sure everything is set for the next day of the Epilepsy Blog Relay. Around 11pm I’ll be out like a light.
NEXT UP: Be sure to check out the next post tomorrow at https://facebook.com/Epilepsysurgeryfriends/ for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.
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