Archive for 17 December 2009
17 December 2009
It has been a pretty quiet month. Under the circumstances, Jasper has done really well. He did not experience a seizure from November 17 until December 12. However, after the seizure last Saturday, he was not so good for a couple of days. The myoclonic jerks are also back, but this time, only in his right hand and they seem less bothersome.
We are also in the process of changing Anti Epileptic Drugs. We switch to a drug that is a bit milder and that also has more neuron protective side effects.
Because we cannot persuade the NIH to move fast enough on our repurposing drug project (to screen existing drugs in the hope of finding positive (side) effects) to help with Batten Disease),we are reaching out to two major universities to help us with this program. We are pretty close to closing a deal with one of them and hopefully, we can finally start this somewhere in January.
Furthermore, we visited some other labs and researchers to do some feasibility checks. We are currently funding one study that applies a promising gene therapy but it’s still in a proof of concept phase.
The fundraising has been a bit slow in the US this month, but people are working hard to plan the big family event being held in late January at Lakeshore Athletic Club, a major health club in Chicago. Many local businesses and families will be participating in this event and for this, we are very grateful. But we did actually have great results from the Philadelphia option trading community fundraiser.
In the Netherlands, things were awesome. A big travel agency made a significant donation in honor of their 25 year anniversary. What’s even nicer is that they also reach out to their entire client base and asked them to make a contribution in favor of our Dutch sister foundation. That’s really great!
This Saturday, we fly to the Netherlands for our home leave so we can celebrate the holiday season with our family for a change. Happy holidays to all of you!