Today I would like to discuss my two dear friends who are on the other side of the world in Australia, Dierdre and Carolyn Pinto, otherwise known as the Pinto sisters.  We have never met one another face to face, but we have become close friends via the wonders of technology.  Together we share a passion/obsession to find a cure for Rasmussen’s Encephalitis.  Carolyn’s 11 year daughter has RE and is scheduled for a hemisphrectomy in October.  Her daughter’s case is a bit unusual in that unlike the fast burn of Grace, her daughter is a slow burner.  Slow burners are very difficult situations as the disease unfolds in a delayed manner and there are quiet periods when life is good.  The decision to perform the surgery is wrenching as your child’s life at times seems normal, but then the seizures return and the nightmare resumes.  My heart breaks for the RE parents that face this difficult decision to remove 1/2 of  their child’s brain.  No parent should ever have to face that decision.  Dierdre and Carolyn are well versed in the science behind RE and both have been invaluable to me.  They are pushing forward to start a local presence in Australia for the RE Children’s Project.  Dierdre will be attending the October research conference, but Carolyn will be taking care of her daughter after her hemi surgery.  Dierdre penned an excellent summary of RE including a proposed agenda for future research projects  (Overview of RE and Possible Research Directions 2010 ).  Please take a moment to scan this paper; it is quite informative.   My deepest thanks to the Pintos.  As always, thank you for your support of the RE Children’s Project.  This is a grass roots effort.  Join the Group Page on Facebook for the RE Children’s Project.  We are in the early innings, on the right track, but it will take some doing and hard work to ignite a research effort.  Please say a prayer for Carolyn and her family.

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