Archive for 19 July 2009
19 July 2009
Already two weeks have elapsed since we returned from our trip back to the Netherlands. We look back at a very pleasant time; we rented a cottage, we were very lucky with beautiful summer weather, and it was, of course, great and important to see our family and Dutch friends ‘live’ instead of through mail, telephone or Skype.
Apart from relaxing and seeing friends and family, there was also some work to do (for Boudewijn) and we used the opportunity to speak with the Dutch press and did a few interviews to raise awareness for ‘our story’ there.
In the mean time we continued our fundraising. We had a couple of events just before we left (A Kids Party at the Hideout and a Baby Gap shopping event in Chicago as well as a Pancake restaurant event in Utrecht, the Netherlands that was organized by our former neighbors). A number of colleagues at employer Fortis Bank in Amsterdam organized a big raffle on behalf of our JasperAgainstBatten fund that raised an considerable amount of money. Furthermore, we received more generous (and sometimes very large) donations from the financial industry (proprietary trading community) here in Chicago as well as Europe (London, Amsterdam).
Since the start (a bit less than 3 months ago) we have raised about $450,000. We don’t have much to feel lucky about, but this is, of course, very uplifting and encouraging!
Next to the funding of the clinical trial (gene therapy) at the Weill Cornell Medical School in New York, we started another initiative. We will screen over 3000 different existing drugs (in various doses) to find possible favorable effects that could slow down the progression of the disease. This screening will be done in a pilot partnership with the NIH (National Institute of Health) and the parameters will be established by a scientific board that consists of a number of leading doctors and researchers within this niche. Our partner, Partnerships for Cure will organize and coordinate all of this. This has not been done before on such a large scale and magnitude and hopefully, something good will come out of it which can be administered immediately or for which we can organize another clinical trial.
Jasper is doing reasonably well. After our return from the Netherlands, the walking was very bad for a little while. It almost came to the point where we started to think that walking was really over forever. However, in the last couple of days, he is doing pretty well and is walking again around the block (with us holding his harness tight to prevent him from tripping over). We are doing exceptionally well with the seizure control as Jasper had only a few very minor ones in the Netherlands, and he has had no seizure at all since we are back in Chicago! In August we intend to increase his PT schedule and we now swim with Jasper every Sunday morning. He really loves it (although he swallows a lot of pool water in his enthusiasm) .
Apart from one evening at the ER after Jasper fell and lost another front tooth last week, we haven’t seen a doctor in a couple of months. On Monday, we will see our neurologist from Children’s Memorial Hospital in Chicago (who just returned from maternity leave). Hopefully, she has some new insights that she can share with us….