Penwest

Last Friday I gave a presentation to Penwest Pharmaceuticals. The purpose of my visit was to let them know that we are grateful for the work they have done on A0001 (alpha-tocopherolquinone, a compound similar to Coenzyme Q10, this drug is designed to improve mitochondrial function, specifically the way glucose is converted to energy, which is often impaired in individuals with FA). My purpose was also to relay the feeling of urgency that is pulsing through our FA community.

During my talk I gave them an overview of my story with some photos and stories to go along with it. I let them know the extreme measures our community is willing to take to cure this disease. I let them know that they are part of our community and we have one goal, to cure FA. At one point, the CEO of Penwest, Jennifer Good stood up and added to my comments making sure that her people know that FARA has been involved in A0001 from the beginning and has pushed things along to make the process as efficient as possible. She reiterated the point that every moment counts when we are talking about a progressive disease and she encouraged everyone to think about why they are doing what they do. I was pretty pumped to hear Jennifer's comments and I am confident that Penwest is working hard to push A0001 along as quickly as possible.

After my talk they gave me a tour of their operations. Tony showed me the labs where they formilate the drugs, make sure they dissolve correctly and ensure that the correct dose will be delivered over the correct period of time. He also showed us a section of the lab where they actually assemble pills starting with solids or liquids. Below is a picture of me and Tony in a section of the lab where we had to put on lab coats, hair nets and little cloth booties, it looks like we are ready to serve some Sloppy Joes !

After the tour we all sat down for some lunch to talk about the upcoming rides and how they might be able to get involved. They are forming the Penwest cycling team and plan to join us on our upcoming rides!

Thanks for allowing me to share my story, keep up the good work, we are rooting for you!!

If you have FA and would like to find out how to participate in the A0001 clinical trial check out the recruitment notice.

If you want to find out more about Penwest and A0001 check out this press release.

Blake and Dan

Two dedicated Ride Ataxia teammates share their thoughts...

Progression: A balancing act.

FA is a progressive disease which means it gets worse over time. This makes things especially challenging because there is a constant balancing act between pushing oneself in order to maximize one's physical abilities and giving in to reason and comfort.

For example, I am in a transition period between walking and cruising in my wheelchair. Whenever I leave the house I have to assess the situation and decide whether or not things will be easier with the wheels. I have to consider the terrain I will be in, the time frame of whatever I am doing, the people that will be there, the activities that will take place, how I am feeling at the time etc.

After taking all these things into consideration I place them on either side of a scale. On one side of the scale are all the reasons why things might be easier with the wheels. On the other side of the scale is one thing: The fact that the more comfortable I get in the chair, the more time I will spend there.

to be continued...