Tuesday, April 2, 2013

Cautious optimism: My visit to the University of Washington.

When Melanie and I decided that we would put our resources towards finding a treatment for MTM, we sought out the people that were working towards the shared goal.  Today I learned that the team of researchers are working tirelessly towards a goal that I once believed would never be accomplished. I am now excited at the possibility that one day we will beat this disease.

Where There's A Will There's A Cure was started to promote research.  Our family and friends dedicated themselves to raising money and awareness.  In under one year we were able to raise nearly $60,000.00 towards this goal. (If you want to meet some of the great people that have donated time to this cause go to the Will Power page at www.will-cure.org)  I had the opportunity to present $50,000.00 to Dr. Martin Childers in order to continue research of gene therapy.  In visiting the lab and meeting with the team, I came away with a wealth of new knowledge.  I thought I would share some of what I learned with you.

1.  The groundwork.
In listing to the oral history of MTM gene therapy, I was struck by the amount of time and effort that has gone into all of the work that has gotten us to where we are today.  The first lesson was that the Frase Family put in more WORK than most people understand.  When I use the word work, I am referring to time and effort.  I have watched Melanie work tirelessly to raise every cent that she possibly can, yet we have not had to find scientists and doctors to conduct the research. Prior to today I did not grasp the amount of effort to that came in the decade prior to William's birth.  The presentation made it clear that 10 years ago there was no framework in place.  I write this because I was truly shocked at the amount of time that has been dedicated to our common cause.

2.  UW Medicine.
The second thing I took away from this meeting was the dedication and excitement of everyone on the research team. In meeting the entire team, one could clearly see that each person is excited about the work and results. They believe they will be successful. They truly believe they are on the doorstep of a treatment.

3. The "wow"
Dr. Childers presented his colleagues with data from tests. As graphs and numbers appeared on the screen, two scientists gasped and said "wow". This reaction was the single biggest verification of Dr. Childers work. Clearly the early testing has gone well. While early results do not guarantee anything, I can say I left excited and optimistic, yet cautious.

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