Friends of Zachary, We recently went to NYU to have Zachary assessed by his medical team. Unfortunately, we did not need a scan or a full neurological exam to tell you what stage he is in. Without being overly descriptive, his functions are ... Read More
Friends of Zachary, The last posting titled "Up and Down", February 18th, was disappointing and concerning to all. The tone of the posting was to show we are dealing with real concerning issues but our continued hope and wishful thinking has never ... Read More
Friends of Zachary, I wanted to share a quick update on Zachary's health and how he is doing on the new drug - BKM120. He's been on the medicine for almost a month. We've been working with Novartis and his NYU team to focus on the correct dosing ... Read More
Friends of Zachary, They say "A Picture Is Worth A Thousand Words" or "Beauty Is In The Eye Of The Beholder". After reading this post, I'll let you come to your own conclusion. Zachary has always been somewhat gifted when describing his ... Read More
Friends of Zachary, Today is a day to remember because Zachary is the first pediatric patient to ever receive under compassionate use, Novartis's BKM120 drug. This is the 3rd drug in combination that was identified by Dr. Oren Becher that will ... Read More
