IMBC

Today, I hear the happiness in my brother’s echoing laugh.  I see the fruit of life in his smiles when my Mom walks into his room.  He is not a vegetable.  I know this, but many don’t.

He was a teacher, a son, a brother, a friend, an inspiration. Whatever he was to you he was special. Our relationship with him will continue as our experiences with him push us all to love deeper, to work harder and to be better. As we face our next challenge, we’ll think of his grace and his quiet determination. Palmer Clay, gratitude does not begin to encompass how we feel for all that you have given us. We love you Palmer.

Palmer was never diagnosed. He lived 19 beautiful years, visited with dozens if not hundreds of doctors, nurses, and scientist and underwent multiple genetic testing but he was never diagnosed. Some thought he fell on spectrum of Cerebral Palsy, some thought he didn’t. And at this point, we may never know what underlying ailment or condition triggered Palmer’s central nervous system to not function typically.

Palmer’s story is not unique. Today, there are over 14 million children, just in the US, that are living with a neurological condition. And while many of these diseases are now diagnosable, the overwhelming majority do not have a cure. This is unacceptable.

Thanks to a 100 million dollar grant through the White House Brain Mapping Project to the NIH, NSF, and DARPA (Defense Advanced Research Projects Agency), a dynamically new approach to how we view the brain has arisen: the CLARITY Brain Imaging Technique. With this technique, scientists are hoping to map brain connections on a large scale, visualizing how every single neuron is fired and interconnected with the other ones in the system. 

In My Brother’s Corner is a blog series featuring Davis George, the brother of Jacob. In this post, Davis writes on the need for awareness of treatments and advocacy for the advancement of these treatments.

Since joining CNS Foundation a few years ago I have communicated directly with hundreds, if not thousands, of parents, grandparents, friends and family members caring for a child with a neurological disorder.  One thing has been abundantly clear…  The science behind the disease along with the practical realities of raising a special needs child is complicated.  For someone without a PhD, the technical and scientific jargon can be confusing, especially when we are trying to understand cutting-edge research.

In January, scientists from both academia and the private sector sat down with the CNS team and advocacy leaders at our 2013 Scientific Workshop: The Best Next Steps to Advance the Field of Pediatric Neurology.  Through an ambitious agenda, we identified barriers to progress and discussed innovative and practical ways to navigate these hurdles.  With support from the California Institute of Regenerative Medicine (CIRM), representatives from Harvard Medical School, Sanford Burnham Medical Research Institute, University of California, Texas Children’s Hospital and other institutions offered e

In February’s State of the Union Address given by President Barack Obama, the concept of a Brain Mapping Project was introduced and hailed as a major investment and necessary first step to understand the complete workings of the human brain.  This endeavor would provide a much needed boost to the intersection of American (and International) biotech, pharma and scientific research sectors.

On Monday morning, July 30, 2012, we lost a very special member of the CNS Foundation community when Hannah Grace Martinez passed away peacefully in her sleep.