Pompe Heroes

This post has been long over due. There are a lot of people that I’m grateful to with regards to the fight against Pompe. Among them are the patients and family who go the extra mile to fight for other Pompe patients. Often, spending their own time and resources in order to improve the lives of Pompe patients around the world.

Early this February several patients, family members and other members of the Pompe community trooped to the FDA to appeal to them for the approval of Myozyme. The AMDA had prepared a short video composed of several testimonies from patients appealing to the FDA to approve Myozyme for use of all patients.

The meeting between the Pompe delegation and the FDA lasted a little over an hour. The video was shown and the delegates were given time to express their own views. A question and answer also followed. I was told that as a whole it was a good meeting.

I was also flattered that one of the delegates, Tiffany who also happens to be a friend of mine wore the Fight Pompe shirt I made. She also read a short message from me towards the end of the meeting. I’m glad that she did that. In a way, it was my small contribution to the Fight.

There are a lot of people that are content to stand by the sidelines and let things be the way they are. Not these people, not these heroes. They actively participate in trying to make a difference in the lives of others for this I am grateful. I am heartened and hopeful of the future because there are people like these who continue to fight and make a difference.

Pompe Advocates at FDA Meeting

_from left to right Ross and J.R. Harvey, Marsha Zimmerman, Randall, Marylyn and Tiffany House_

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