I wrote this column for our June/July organization newsletter and thought it had information worth sharing with a broader audience about our TIRCON activities.
I recently returned from visiting Warsaw, Poland, for the first time. I was there as the representative for the NBIA Disorders Association for our second meeting of the General Assembly for the European Union grant, Treat Iron-Related Childhood-Onset Neurodegeneration, or TIRCON.
It was a poignant meeting ground for our group, as we take what often feels like small steps on the path to a cure for NBIA.
We are making progress, though. You might recall that we first met in Munich in January 2012 to start working on this project with our European partners. We just completed our 18-month report for the four-year research consortium which includes 13 partners from eight countries.
Other facets of the grant are the International Patient Registry and natural history study; a biomaterial bank; and studies to define the potential of pantethine and pantethine derivatives to treat PKAN. Our families participated in contributing to the International Patient Registry and the biomaterial bank at our recent family conference.
I was happy there was time for sightseeing so I could learn more about this city. I joined a bus tour and a walking tour that explored Warsaw’s Old Town which was 90 percent destroyed by the Nazis in World War II. Ordinary citizens helped to rebuild this area with donations from across the country. Today it is an almost exact replica of what it looked like before the war.
Throughout the city there are many statues and monuments to important figures, honoring their contributions to fighting for freedom during the country’s history of oppression by different countries over the past several hundred years. After the war, Poland was controlled by communist Russia. Since the birth of democracy in 1989, the country has made great strides in moving forward and embracing freedom.
As I learned more about this history, I was inspired by the people of Warsaw and moved by their quest. They never gave up their fight for freedom. Even though they experienced horrific things, they carried on. They stood together and ultimately changed their lives for the better. They now have a beautiful city and pride in what they created.
We can follow in their footsteps and stand together for our cause, to create a better life for those with NBIA. “Together for Tomorrow” is the name of our new fundraising campaign and we hope you will be there with us in our fight, to help us never to give up.
Welcome to Brain Iron Matters, the official blog for NBIA Disorders Association. Our board of trustees, Scientific & Medical Advisory Board, staff and invited guests will share information of interest to our community.