January 13, 2011

New Year New Hope

Now with the Holidays behind us and a new year ahead I look for new hope. Hope that the doctors and researches with come up with a promising treatment for Niemann Pick Type C (NPC) and that it can be made for all children affected by this horrible disease. Over the past couple of years there has been a lot of talk about Cyclodextrin treating NPC. Chris and Hugh Hempel and Bryan and Laura Hadley have both their children on it. I have talked to Dr. Patterson about it many times and he feels there is not enough data to support the effects of Cyclodextrin on NPC to put Tylor through the procedures. But on the other hand how can we just sit here and do nothing? I am in the process of doing more research and will be contacting the Hempels and the Hadleys about the results they are seeing with their children. We are going back to Mayo in February and I plan on talking to Dr. Patterson about this again. The biggest hurdle will be going to the FDA for approval but if the Hempels and Hadleys got it done I am sure they will have some advise for us.

Some of you may be wondering what Cyclodextrin is. Cyclodextrin is a sugar molecule used in common food and household products like Febreze® Fabric Refresher called Hydroxypropyl Beta Cyclodextrin(HPßCD). To find out more please visit the CTD Holdings, Inc website.

God Bless


  1. This is really good post. Your expectation is pretty fair. I hope your will fulfill in this year.

  2. I hope you would be fulfilled your dream of last year. The next year coming at next door. So what is your new hope behalf of Tylor.