Well, time for a long awaited update on how things are going. We've been incredibly busy. Working all day, doing Foundation business, planning events, travelling to and from Toronto for treatment, and doing the small things in life have really been exhausting us of late. We never seem to find the time to return email or telephone calls. And when we do, they keep coming!
Our Application deadline is quickly approaching and we've received some grant requests already. We're looking to give out a two year grant in the range of $80,000 - $100,000 and can't wait to get the process of reviewing applications started. It feels good to be able to be part of finding a cure for Isaac and other children affected with this disease. We'll keep working to put more money into innovative projects. We know this will make a difference in Isaac's life. A few years of exhaustion is a small price to pay.
Isaac appeared in two newspaper articles last week, both of which are available in our Media section of the website. They were fairly well done and it's nice to continue to get media interested in our cause. You never know who's watching...
We got Isaac's MRI results back. They were looking at his spinal cord compression and the results of the decompression surgery he had last April. Things are great as far as the compression goes, but unfortunately his kyphosis (curvature of the spine) is getting worse. And ERT doesn't help with skeletal problems associated with this disease. It was a tough few days when we found out that it's getting worse because it brings us back to reality quickly. It's easy to know that treatment is helping Isaac's symptoms but we have to remember that ERT is not a cure and we must find better treatment options soon.
We'll be sent to see an Orthopaedic Specialist to track the changes in his spine. In the near future, Isaac might have to wear a back brace. In the coming years, it might mean implanting some rods in his back to stabilize his spine. Not something we're looking forward to for him, obviously.
And Isaac will be receiving a dosage increase for his ERT beginning next week. Hooray! This means he's gaining weight and needs a higher concentration of the enzyme his blood is lacking. Hopefully this will lead to another growth spurt.
Planning for the Race Weekend in Ottawa is going well. Our team is growing and we're hoping to raise a lot of money through the event. Check out the Events link for more info. While we're writing about events, we want to thank Kim Duca for organizing and performing at a wonderful Benefit Concert for Isaac that took place in Kingston on April 22nd. It was a beautiful night, with some great performers giving their time for our cause. And thanks to everyone that attended, we truly enjoyed ourselves.
Our golf tournament has been scheduled for June 23rd and there has already been intense interest from teams. If you know that your team would like a spot in this year's tournament, please email us ASAP so we can reserve a spot for you. Cost is $500 again, which includes golf, carts, and dinner for a team of 4. We will again be holding a silent auction and all golfers will receive a prize package at the event.
On a last note, check out our FACEBOOK group, if you're on the ever-addicting networking site.
That's it for now. We'll try to update again very soon.
The Isaac Foundation