Dreams on Wings 5K and Virtual Run

Coming Your Way This Spring! 

May 18th, 2013 

You can Run it!  You can Walk it!  Heck, You can even sleep-in and get the T-Shirt, but you've got to be a part of the 2013 Dreams on Wings 5K.  This year we have at least 2 fully sanctioned races in Texas and New Hampshire!  And of course we will have our popular Virtual Running Teams!  As in the past, the largest Virtual Team will have a 2013 scholarship named after their team!

This is your chance to help bring awareness to OUR kids and families and what they've endured.  So start recruiting your teams now!  Family, Co-workers, Friends, the mailman, strangers off the street...Recruit them all!  

Tissue Collection Protocols

by Seth Wohlberg, RE Children's Project

For the past few months we have been transferring brain tissue following hemispherectomy surgery to research teams at UCLA. Yale, and Johns Hopkins.  As previously discussed in prior blogs, this is not an easy task and has been an enormous step forward in our efforts to advance research in rasmussen's.  The availability of this tissue will create and drive research interest into RE.

The RE Children's Project has now completed a manual (click on this link to view) that addresses the  transfer of this tissue.  It is a step-by-step guide on how neurosurgeons can extract the rasmussen's tissue, properly store, and then ship it for research purposes.  The manual was assembled by Joe Voros, our Research Coordinator with input from several research organizations.  This is a first of its kind manual and we are hopeful it is a major step forward in our efforts to increase awareness and drive research dollars into RE research.

Please print out this manual and provide it to your neurologists and neurosurgeons.  This is an absolute imperative and a moral responsibility for the families impacted by this disease.  We have already missed a few surgeries and opportunities to transfer the tissue.  RE is very rare and although there is great tragedy and despair associated with the surgery, having access to the tissue after surgery will help us prevent other families from experiencing their own devastation.  A heartfelt thanks to Joe Voros for his hard work.  Please let us know if you are aware of an individual that is scheduled to have hemispherectomy surgery due to RE.

As the year winds down and Fall begins (in the northern hemisphere) please consider the RE Children's Project for your year-end philanthropic giving.  Any amount is fine.  The RE Children's Project is a labor of love and we have made enormous strides in 2 years, but the cold hard reality is that we need funds to keep this going.  I frequently receive e-mails of admiration and expressions of support with questions of how can I help.  It's simple donate, please click on this link, donate what you can afford no matter the amount and let us know you stand shoulder to shoulder with our efforts to fight a rare disease and demonstrate to other rare diseases that despite the odds that they can make a difference with hard work and determination.

Solving rasmussen's will shed light on the epilepsies.  There are no celebrity spokespeople for epilepsy admitting that they suffer from seizures.  Epilepsy affects over 3 million Americans of all ages - more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined and 50,000,000 worldwide. There are approximately 50,000 deaths a year attributed to epilepsy, that is more than breast cancer.  In over one-third of epilepsy cases, the seizures are uncontrollable.  With rasmussen's the only course of action is to remove half the brain.  There are no drugs to stop the seizures.  It's time for the epilepsies to come out of the shadows.

For more information on The RE Children's Project, visit http://www.rechildrens.org/