A 2013 Blog from Betz Family in Columbus 

4 years ago today, on the initial 2011 Run for Research, I dedicated the very first day of running to a specific child named Celia Betz from Columbus, Ohio. I had no idea I would still be running 4 years later on my 3rd and Final Run across America. Celia would have been 8 years old today on Day 8. Without the parents and families supporting me along the way, there would not have been a second Run- the 2013 Run Coast 2 Coast, or this finale 2015 Run for Rare. This has been team effort and as long as the families of Batten and Rare give me the green light of approval, I will continue to get the word out. 

So Happy Birthday Celia! 

I still remember crouching behind a a sand dune to escape the wind to make the phone call to Celia on her 4th Birthday. Why? Because it mattered. Celia’s story matters. Batten Disease matters. RARE matters. Every Life matters. We are all connected as a species. It is fascinating to see the significant links between RARE diseases and the more common diseases. I am inspired by the scientists and researchers and all who contribute to elevating and improving the health and well being for us all.