Schizencephaly Awareness WeAreRare.org

Making eggs and bunny Noah

His control on the left side astounds me with so much of the temporal lobe missing. He loves working on peekaboo barn and flashcards and has worked really hard to answer Yes and No. I am so proud of him. Go Noah!!

April 17th Noah has to be put back under for his button to be placed. Last time he went under what was suppose to be a 2 day stay ended up being a three week hospital visit because of how bad Noah's lungs are from scoliosis. Hoping this one goes much smoother.

Www.Noahscart.org

Neural Stem Cells in Development and for Brain Repair May 4 - 12, 2013 Coordinator: Elena Cattaneo University of Milan, Italy Faculties: Arturo Alvarez-Buylla , University of California, San Francisco, USA Oliver Brüstle  , University of Bonn, Germany Pete Coffey , University College London, UK Gianvito Martino , San Raffaele Scientific Institute, Milan, Italy Anders Björklund , University of Lund, Sweden Lorenz Studer , Memorial Sloan Kettering Cancer Center, New York, USA Hynek Wichterle , Columbia University, New York, USA A number of neurological diseases are characterized by the loss of individual neuronal subtypes and/or specialized glial cells. The ongoing effort is to understand the underlying pathophysiology in an attempt to identify suitable drug targets. Opportunities have emerged within the stem cell field. Unprecedented advances have been made in our understanding of stem cells and through them much can be learned about the physiology and

Science News ... from universities, journals, and other research organizations  Save    Email    Print    Share Oxygen Chamber Can Boost Brain Repair Years After Stroke or Trauma Jan. 23, 2013  — Stroke, traumatic injury, and metabolic disorder are major causes of brain damage and permanent disabilities, including motor dysfunction, psychological disorders, memory loss, and more. Current therapy and rehab programs aim to help patients heal, but they often have limited success. Share This: 343 See Also: Health & Medicine Nervous System Brain Tumor Birth Defects Mind & Brain Brain Injury Disorders and Syndromes Neuroscience Reference Brain damage Encephalopathy Oxygen therapy Sensory neuron Now Dr. Shai Efrati of Tel Aviv University's Sackler Faculty of Medicine has found a way to restore a significant amount of neurological function in brain tissue thought to be chronically damaged -- e

STROKE DAMAGE IN MICE OVERCOME BY TRAINING THAT ‘REWIRES’ BRAIN CENTERS Release Date: 02/05/2013 Study findings suggest physical and pharmacological solutions for human stroke victims Johns Hopkins researchers have found that mice can recover from physically debilitating strokes that damage the primary motor cortex, the region of the brain that controls most movement in the body, if the rodents are quickly subjected to physical conditioning that rapidly “rewires” a different part of the brain to take over lost function. Their research, featuring precise, intense and early treatment, and tantalizing clues to the role of a specific brain area in stroke recovery, is described online in the journal  Stroke. "Despite all of our approved therapies, stroke patients still have a high likelihood of ending up with deficits," says study leader Steven R. Zeiler, M.D., Ph.D., an assistant professor of neurology at the Johns Hopkins University School of Medicine. "

After 12 years of eating and drinking just fine Noah had a few issues with pneumonia this year and began refusing drinks. The feeding tube has been a huge relief on mommy and Noah made some really special friends in the hospital and even Dr birnbaum came for a visit. We are so blessed!

Our good friend Faith sent Noah a very special gift this last week. Her very own Kermit the frog was sent to Noah and he and kermie have been inseparable!!  He won't even try to go to sleep without him. Best gift ever. We love you Faith!!

What a great time meeting the promise radio station and seeing veggie tales live in Jacksonville. Noah had a blast and we handed out 150 flyers about schizencephaly. Looking forward to doing an interview with the promise radio station!

Noah's had such a great time meeting the city of St Augustine. And the outpouring of support from the community for the fundraiser has been amazing. The Marina has donated a jet ski for a raffle and a skif boat and Noah got to meet the famous William mayhem. We look forward to seeing you and Noah raising the banner saying "schizencephaly awareness" that will go port to port along the eastern seaBoard until it reaches Nokia Scotia and Noah's Schiz buddy danna for her huge awareness day kick off!

noah has a very special day coming up  hes been invited to hoist a banner that will go from port to port that will help raise awareness for schizencephaly  join us for a day of fun with over 45 pirates and a celebration of life .including a jet ski and boat giveaway and prizes and fun  a huge announcement will be given that day as well 

Noah had a huge surprise today when we were leaving for the property up north a package arrived. Out jumped Kermit the frog! Noah loves Kermit and this one was sent special by another little girl named Faith with schizencephaly all the way in Alaska! What a special day and what special friends Noah has