In early October, several of us from The Hemispherectomy Foundation were privileged to attend the first International Workshop on hemispherectomy.  This workshop, organized by Stella DeBode, was held at The University Medical Center in Utrecht, Holland and brought together some of the most brilliant scientific minds in neurosciences.  A big THANK YOU to Stella, who is a member of The Hemispherectomy Foundation Medical Advisory Board,  for organizing this event.  This conference was a first-of-its-kind event to merge neurologists and neurosurgeons with neuropsychologists, neuroscientists and rehabilitation specialists.  The goal was to bridge clinical knowledge with insights into cortical plasticity and reorganization.  From The Hemispherectomy Foundation, Lynn Miller, Specialty Director, Rasmussen's Encephalitis, her husband Al, and daughter Jody (Right Hemispherectomy in 1993, and current college student) were in attendance.  Co-Founders Kristi and Cris Hall were there as well.  Hemi Foundation Medical Advisory Board Members in attendance included Gary Mathern, Neurosurgeon from UCLA Medical Center, Adam Hartman, Neurologist from Johns Hopkins, Harry Chugani, Neurologist from Children's Hospital of Michigan, Yong Park, Neurologist from Medical College of Georgia, and of course Stella DeBode, Neuroscientist from the Rudolf Mangus Institute of Neuroscience.
 

The Program and Abstracts from the event, can be found at http://www.umcutrecht.nl/subsite/Hemispherectomy-workshop/Program/
 

Other Neurologists, Neurosurgeons, and Neuroscientists from all over the world were in attendance, including from the UK, Japan, Russia, Germany, South America, USA, Holland (host) and others.

At the end, I was allowed to talk on behalf of the hemispherectomy families.  I was honored to be able to speak to this most amazing group.  Reflecting on the weekend and what was presented, I realized that the doctors really do understand a lot of the hardships that our families face on a day-to-day basis.  Many of them have devoted their lives to solving the problems that our kids and families endure.  It is not an easy job for them, and many of them work long hours to try to find solutions for us.  So, the next time you get a chance, don't forget to thank them for their dedication.  For all of the doctors and neuroscientists reading this now, *We Thank You!*
 
There are more scientists doing hemispherectomy research than you can imagine (pre-surgery, surgery, post-surgery, and rehab)  This is happening all over the world.  As I watched presentation after presentation,  I began to appreciate the volume and diversity of current and past research.
 
From a surgical perspective, there are many hemispherectomy techniques being used.  It's not as simple as anatomical and functional.  There exists a virtual continuum of techniques and procedures, starting from vertical and horizontal hemisphereotomy, where very little tissue is removed, to a complete anatomical hemispherectomy where the complete hemisphere is removed, including some of the deeper brain structures.  The variations, although similar, vary based on etiology, age of patient, seizure location and frequency, surgeon's preference, and more.   The refreshing part of this workshop wasn't a realization of "the best" techniques, but rather a realization that the scientists and doctors were talking about it and listening to each other.  They might not agree, but their openness is the key to making this surgery better for all families yet to come.
 
 From a few of the sessions, here are a some items to keep in mind as you move forward post-hemi:
 
 1) Keep your kids as active as possible.  Just like for me and you, they will do better in the long run if they stay active.
 
 2) Give them as much freedom as possible.  It is scary at times, but they will do better and be happier if you give them the chance to explore.  This, of course, has to be weighed with each child's functional level and safety.
 
 3)  If doctors or scientists ask for data or are doing a study, please take time to participate, even if you don't see the value.  Participation and larger numbers will help the doctors and scientists move forward in their research to help our families and those to come.  We have only a small pool to draw from; the more of us who participate, the better the results.
 
 4)  If your doctors didn't participate in this workshop, encourage them to get involved next time and in other events related to hemispherectomy.

 5)  Parents, get involved.  If you don't know how, contact The Hemispherectomy Foundation and we can help you get started.  Start small, and if you like it, the rest will fall into place.
 
As always, we at The Hemispherectomy Foundation continue to work for the betterment of our community.  No Hemispherectomy Foundation funds are used for our travel to events like these.  It is paid for out of our own pocket, because we love what we do, because we adore your children and because we seek to make the lives of our community better.
  
 Warm and Kind Regards,
  
 Cris Hall, Co-Founder, The Hemispherectomy Foundation

Deidre Wohlberg, Grace Wohlberg, Seth Wohlberg, Susan Axelrod, Cris Hall