As luck would have it, Level 10 Nationals is in Long Beach California ~ just 30 some miles from UCLA Medical Center where Dr. Joanna Jen works. Dr. Jen was the first person I actually spoke with about Makenna. She called me the day after I e-mailed with questions about the possibility of Makenna having HGPPS. She was the first to recount the many people that she had seen with HGPPS who lived full and happy lives. She assured me that Makenna would be fine.
Dr. Jen was gracious enough to meet with me today. We sat and talked for almost two hours. Again, another Neurology lesson for me. Each time, I gain a little more understanding. This meeting taught me about the history of identifying the disorder and the gene responsible. I am amazed at the ability of these researchers and those like them. They are uncovering mysteries every day. Makenna is evidence of how complicated and amazing the structure and function of the human body is.
I am so grateful for the work that they have already done and the work they continue to pursue.
Dr. Jen was gracious enough to meet with me today. We sat and talked for almost two hours. Again, another Neurology lesson for me. Each time, I gain a little more understanding. This meeting taught me about the history of identifying the disorder and the gene responsible. I am amazed at the ability of these researchers and those like them. They are uncovering mysteries every day. Makenna is evidence of how complicated and amazing the structure and function of the human body is.
I am so grateful for the work that they have already done and the work they continue to pursue.