Monday, February 26, 2007

Countdown to Nightline Airing Our Journey

Today Nightline posted a preview of the week's stories. Click here to see a clip of Marcy and me. Early this morning we put a brief notice out on the news wire, CNN Matthews. Canadian Press will put something out on Wednesday and CBC TV will come to shoot Thursday. What a crazy week to be away on business!

Saturday, February 24, 2007

This Drug Might Help

Last October the first sick mice were given this new drug to see if it helped relieve their symptoms. Unfortunately, there was no significant indication that it helped. At least it did not seem to harm the mice either.

After a while, the research team agreed to try higher dosages of this drug. A week ago we found out that the new dosage showed some obvious improvements in the mice. The researchers video taped several different experiments for us to see. This really was the profound improvement we had dreamed about!

While this is still a very premature conclusion, it's important to get working on the next steps to streamline the overall process. We're not even sure how to navigate the system to get compassionate access to this experimental drug.

Here in Canada, there is something called a "section 8" that we need from the government. It seems we'll need doctors' approval, hospital approval, and various layers of government approval. Anyone who can help us navigate this beaurocracy would be greatly appreciated. We'd especially appreciate help from people with strong ties to Toronto area hospital administration.

Of course, even with approval from the government, we'll still need to get some of the drug from the manufacturer. It's not even clear to me how to convince the pharmaceutical giant to part with this drug while it's still experimental. Again, any advice or contacts would be greatly appreciated.

Jacob will be five years old this May. We first found out about this drug three years ago. It took over a year before we were able to get a research project approved to use this drug. Now we're gated by the speed our mouse colony can reproduce. Please help us take as much time out of the process as possible. Jacob needs this to work.

Thursday, February 22, 2007

Nightline Interview

Just a few days before Nightline was scheduled to come interview Marcy and me we received incredible news from our research team at Wayne State. The drug we're testing appears to have a noticeable effect on the sick mice! Before long we managed to download several video clips of our dear little mice. Of course Ethan, our Nightline producer, was thrilled to get this news as he'd already planned to air our story.

On Wednesday a local camera crew showed up at our house and transformed our family room into a television studio ready for John Donvan to fly in for an interview. John was a very warm, interested and compassionate interviewer who spent a few hours with us discussing our lives since Jacob was born.

After the interview along with the camera crew, TV producer, Nightline correspondant John Donvan, we headed to Zareinu to film Jacob at school.

This was a big day for all of us.....