Thursday, July 23, 2009

Little Man, Huge Heart

So I came home from the FARA Therapeutics Symposium last Sunday jet lagged, exhausted and more motivated than ever. Spending a few days with the world's leading scientists who are using the money that we raise to find a cure for the disease that alters our lives could not have been more rewarding.
Dr. Mark Pook and Dr. Jim Rusche; both are past recipients of funds raised by Ride Ataxia

When I got home, I was going through my mail and I came across an envelope with second grade handwriting on it. I opened it up and this is what I found:

Enclosed was Jacob's cash donation. Wow, that's pretty powerful. I spoke at Pleasant Ridge School (my alma mater) a couple times and this little guy remembered very clearly, he even spelled Ataxia correctly! Thanks Jacob, you provided another boost at the end of an exciting week!

Thursday, July 16, 2009


Here is a short clip of my presentation at the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. I'll get better at the videography, I promise...

Wednesday, July 15, 2009


I am speaking in the morning. I get pretty amped up when I am preparing for a speech. I plan out what I am going to say in my mind and then I imagine myself delivering the message and I imagine the audience reaction, I kinda go through the whole thing before hand so when I get in front of the audience I have already given this speech to this audience in this very situation. I guess you might call it visualization...

So I decided to prepare during a workout on the stationary recumbent bike in the fitness center here at the hotel tonight. My target heart rate zone for tonight was 135-140 bpm. So I started pedaling and I reached 135 comfortably and I was holding pretty strong. So I took my eyes off the heart rate monitor and started thinking about what I am going to say in the morning. I imagined introducing myself, thanking the researchers for all their work, telling them that we are rooting for them, telling my story from diagnosis to triumph and research funds... I finally looked down at my heart rate monitor and It said 155 bpm, I overshot my target a bit. Wow I got pretty amped while imagining myself in front of the crowd. I might even work speeches into my regular workout routine, perhaps I will wear my heart rate monitor in the morning and it can serve as a workout...

Tuesday, July 14, 2009


I am spending the week in Philadelphia at a meeting of the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. Its pretty nuts hanging out with a bunch of researchers and scientists. Something truly amazing happens when you get all this brain power in the same place and concentrate it on a common goal, its like a little kid burning ants with a microscope...kinda. For example, tonight I was sitting at the dinner table with a bunch of researchers that represent different research and scientific entities around the world and they were talking about phenotypes and enzymes and mitochondria and I got lost very quickly. However, it seems they could go on for hours about this stuff. They get it and they are sharing it with each other here this week. All these ideas from all over the globe are coming together in the same place to share and learn in the quest for a cure.

A great thing for me is to realize that we (the lay people, the passionate fundraisers, the Ataxia community) are a huge part of the process, we are part of the energy that gets concentrated to create the heat that burns the this metaphor working? An illustration of this point: at dinner I was sitting next to Dr. Miriam Rai, who works in a lab in Brussels, Belgium under the direction of Dr. Massimo Pandolfo. Miriam was telling me about some compounds that she is studying. She gets these compounds (HDAC inhibitors) from Repligen corporation who is operating with money that they received from the grants that were funded through Ride Ataxia II. It was truly rewarding to see that our efforts are being put into action in the laboratory. Team Ride Ataxia and all the grassroots fundraising efforts are what is driving the research! We are a huge part of the solution!

Monday, July 13, 2009

Ride Ataxia Philly

Hey folks. I am super excited to announce the next event on the Ride Ataxia Calendar. Ride Ataxia has been working closely with Outback Steakhouse and FARA to put together a one day ride in Philadelphia in October. This will be the first Ride Ataxia event on the east coast! We hope that a smaller event like this will allow for more participation from those who could not commit a week or 10 of time to our previous events. This event is going to be a lot of fun with different lengths of rides to span the spectrum of abilities, great food from Outback Steakhouse, Bonefish Grill, and Carabba's Italian Grill, and fall festivities for all ages.

We will have online registration and more info available soon. For now, mark your callendar for October 25, 2009 for Ride Ataxia Philly! For more information please visit