Tom Phipps “Chish and Fips”

My experiences with GDNf.  Tom Phipps.

I had just finished a cycle ride with my son from London to Paris. We started at Greenwich in September 2012 at the same time as the disabled olympics. It was challenging and filled me with a sense of purpose. In this mood I attended a lecture given by the inspiring neurological consultant dr Alan Whone.  He was explains the theory behind a groundbreaking research project using gdnf . A hormone type substance that works at the cellular level to enhance the growth and regrowth of the neurological cells that have been lost or damaged.  The substance is such a large molecule that it cannot be injected into the bloodstream as I can’t pass the blood / brain barrier. So an engineering solution was designed to deliver the drug directly to the parts needing restoration.  Alan was so positive about the system and the team I asked if I could be considered for the trial.  After a series of tests I was asked to attend the hospital in Frenchay for two days of procedures involving 14 hrs under sedation.  I then needed more surgery to the skin around the port to ensure it couldn’t be compromised by infection.

I have a number of tales I can tell about the experience mostly due to my procedure being the first one of a six person pre-research safety group.  The purpose of the group was to pave the way for methodology planning for the main research group of 35 persons.

The system  was brand new  and  every step of the way was diligently monitored by the personnel .  I sà the remember the time when Dr Whone and the lead nurse Ms L Mooney accompanying me in a taxi to Cardiff for a CT scan. This was to enable direct measurement of the progress of the cell rejuvenation.  I had to have a MRI scan whilst being infused the stand followed me around to the scanner and so did Dr N Barua  who even came into the wc with me! “ Not what I signed up for,” then the lights went out!

I felt very much the guinea pig under instructions not to share my symptoms with anyone else on the trial.

The result was very positive in my case even though my system had its shortcomings and I received a fraction of the drug due to blockages in the tubes. Sadly the measurement criteria set up for the trial was left wanting and has informed future trials. I would love to get involved in a revival  of the trial.   Here’s hoping…