Wed, Jun 08, 2016

European Adventures-Tour for a Cure!

Category: General

Mare and I with his parents, Claudia and Alesandro in Italy

In May, I experienced the trip a lifetime! I was given the opportunity to visit our European MTM families, and all the pieces to make this trip possible fell into place. My girlfriend, Lisa Nickerson who worked for JFF many moons ago, came with me as my tour guide and wing-woman. Lisa is a publicist extraordinaire, and she helped me document the trip. We dubbed this trip the "Tour for a Cure."

Lisa and Alison on the train

To be able to spend time with families I have been communicating with for many years and to meet their children meant more to me than words can express. The whirlwind of a trip was spread out over two weeks, and across four countries. I began in the beautiful city of Rome, spending time with three of our Italian families and their precious children. Their hospitality and warmth they shared made me feel like family, like I was home.

Alison, Anna, Hannes, and Ruben

I then attended a workshop in Amsterdam hosted by the European Neuromuscular Center(ENMC) focused on Titinopathies. Very exciting work is being accomplished for this indication (see insert below). From there it was on to Paris to film a documentary with one of our rock star researchers, Anna Buj Bello. I spent a long day at Genethon with Anna Buj Bello and The French Muscular Dystrophy (AFM) production crew filming for five hours on the latest in gene therapy research and the progress being made. Last but not least, I traveled to Frankfurt, Germany to attend the 2016 ZNM Myotubular Trust European Family Conference. The theme of the conference was #TogetherEvenStronger. Although there was a language barrier, there was a depth of understanding and compassion shared that transcended words.

Always for the children,

Alison