Date:  March 11-12, 2005

Subject:  Pediatric Brain Foundation’s (formerly CNS Foundation) 2005 Board Retreat and Think Tank

Location:  Boston, Massachusetts

Chair:  Jeffrey D. Macklis; Professor of Stem Cell and Regenerative Biology, Harvard University, and Professor of Neurology [Neuroscience] and of Surgery [Neurosurgery], Harvard Medical School; Department of Stem Cell and Regenerative Biology, Center for Brain Science, and Harvard Stem Cell Institute, Harvard University

Attendees:  Pediatric Brain Foundation Board of Directors, Pediatric Brain Foundation Scientific Advisory Board, and special guests, including Dr. Macklis, Dr. Evan Snyder, Dr. Mark David Noble, Dr. Mahendra S. Rao, Dr. Michael J. Rivkin, Dr. David H. Rowitch, Dr. Volney L. Sheen, Brad Margus, and Fia Richmond

Recap:  Pediatric Brain Foundation’s 2005 Board of Directors Annual Retreat and Think Tank was held at the historic Bulfinch Building in Boston on the weekend of March 11-12, 2005, bringing together the members of the Pediatric Brain Foundation Board of Directors and Scientific Advisory Board, and special guests. Pediatric Brain Foundation board member Dr. Jeffrey D. Macklis, director of the Massachusetts General Hospital-Harvard Medical School Center for Nervous System Repair in Boston, generously hosted the retreat, which was conducted, in part, at the renowned Ether Dome. The two-day event included scientific presentations, a tour of the MGH-HMS Center for Nervous System Repair, a Pediatric Brain Foundation Think Tank and an Executive Session of the Board of Directors.

Participants of the first day’s program included Dr. Macklis and fellow Pediatric Brain Foundation Board of Directors member Dr. Evan Snyder, Pediatric Brain Foundation Scientific Advisory Board members Dr. Mark David Noble and Dr. Mahendra S. Rao, and special guests Dr. Michael J. Rivkin, 
Dr. David H. Rowitch, and Dr. Volney L. Sheen. Each esteemed scientist and researcher gave presentations to help the audience better understand the science involved in finding cures for pediatric neurobiological disorders.

On the Retreat’s second day, Brad Margus, Volunteer President & Co-founder of A-T Children’s Project, and newly-elected member of the Board of Directors of Pediatric Brain Foundation, led a group of scientists and lay people in analyzing and creating a strategy for funding new research projects. Known as the Pediatric Brain Foundation Think Tank, these sessions focused on the review and discussion of research projects submitted in response to the Tarrytown Research Initiative.

At the Board of Directors Executive Session, members reviewed the progress made by Pediatric Brain Foundation over the past year and formed plans for accomplishing the vision of Pediatric Brain Foundation for the future.

Fia Richmond, the founder and President of Pediatric Brain Foundation, opened the Executive Session with these introductory remarks:  

“Today we will take time to look backwards in order to look forward.  We do this because of a common thread, the desire for a brighter, healthier future for the 14 million plus children affected by neurological conditions. On a recent visit to a special needs father in D.C., he remarked to me, “it is painful to hope.”  In reflection I started to realize just how true that is for so many — for too many special needs parents.  Often times I wonder: Where are all the parents?  14 million is such a large number; yet, our children are barely seen or heard.  This gentleman’s statement reminded me of my own despair in the first years of Palmer’s life but it also provides me with some insight.  Many parents are hidden behind a veil of despair.  The hope they once had was diminished by either the doctor’s lack of answers or the long wait for medical miracles.  
The pejorative view of that word, miracle, is itself one that can keep you behind that veil. 

But I began imagining myself without hope and realized that that reality was just way beyond my personal capacity for pain.  There is just too much good science and the human body is just too amazing not to hope.  So today I am asking a favor of you: If you despair; if you are at all guarded and trying to ward off disappointment that there are no therapies in your grasps at this moment in time for your children, that for today you let go and take a look backwards so that we can look forward and imagine the future with doctors who have answers and can offer our children effective curative treatments.

In closing I ask that you think of the children as I read you the following quote by author Susan Griffin.

She writes, “A change in public perception will change the public.  This is why acts of imagination are so important. Every important social movement reconfigures the world in the imagination.  What was obscure comes forward, lies are revealed, memory shaken, new delineations drawn over the old maps.  It is from this new way of seeing the present that hope for the future emerges. . . . Let us begin to imagine the worlds we would like to inhabit, the long lives we will share, and the many futures in our hands.”

Now, I would like to introduce you to my friends, two of the world’s great scientists and individuals, Drs. Jeffrey Macklis and Evan Snyder.”