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Another Landmark Event

June 25, 2012

Yesterday, the first-of-its-kind conference on epilepsy mortality concluded (PAME).  For two and a half days, in Evanston (just north of Chicago) epilepsy researchers, clinicians, bereaved and interested persons and families from around the world gathered to build and leverage partnerships that will foster knowledge, increase awareness and hasten action around epilepsy mortality and SUDEP (Sudden Unexplained Death in Epilepsy).  We were proud to be a major sponsor of the meeting.

Hundreds gathered at this conference, which was chaired by Dr. Jeff Buchhalter of Phoenix, AZ, and our own Gardiner Lapham.  I am in awe of the work that they, and others, put into this conference, which is an outflow of the significant momentum in the field.

Just a few years ago, a gathering like this was only a dream

I couldn’t have been more pleased to see presentations by so many of our CURE grantees who have pioneered work in SUDEP and, in all honesty, really opened up this entire area of research.  Their work is cutting-edge, and represents the hope that research offers.  What our investment in these seed grants have resulted in, is nothing short of breath-taking.

CURE Board member Barb Kelly addressed the participants about the importance of seed grants in advancing research in SUDEP

I’m also in awe of the families who came who had lost loved ones – their courage, their willingness to participate in honor of their family member or friend, and their desire to be a part of the change that needs to happen was moving and inspiring.  And the families and patients living with epilepsy, who believe knowledge is power, and that it is better to know the inherent risks associated with epilepsy, than to be blinded to them.

The opportunities for conversations during breaks and meals were so thought-provoking – for clinicians to hear from patients what they would like to be told in their office visits and how they would like to be told (and when) can’t help but change thinking and behavior. And, vice versa – for patients to hear from clinicians about why these are difficult conversations for them to have, was informative and built new understandings that will ultimately improve patient care.

Jeanne Donalty, and PAME Co-Chairs Jeff Buchhalter, MD and Gardiner Lapham, RN, MPH take a brief break to pose for me!

Gardiner opened the conference with these amazing words.  I hope you’ll read about her personal journey and her hopes for the future.

Gardiner, Vicky Whittemore, PHD, Epilepsy Program Director at NIH/NINDS and Barbara Kelly prepare for their session

And… for all you procrastinators….tomorrow is the last day to bid on once-in-a-lifetime baseball experiences and support epilepsy research!!!


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