Sorry it's taken so long to update our blog. We've been swamped with planning for the National Capital Race, Preliminary planning for The 2nd Annual Isaac Foundation Golf Tournament, work, and life in general!
Race Weekend preparations are going very well. We have a lot of people that will be running the race for us and we are confident that we'll reach our goal of $20,000. We'll update more soon but if you know of any runners or walkers that would like to participate in any of the races to support The Isaac Foundation, send them our way ASAP.
Since our last update, Isaac has grown another 1/2 inch, which puts his total growth at 2 1/2 inches since ERT began. It's incredible to know that his treatment is working. Trips to Toronto are becoming a normal part of our lives and we're grateful that Ellen's mother, Paula, can make the trips with us on a weekly basis.
Also since our last post, we received a comment on one of our blog entries about BioMarin, the drug company that makes the treatment that Isaac receives. We have often talked about how frustrating it was to try to deal with this company, and about their unwillingness to work with families and provide support when we need it most. The comment we receieved was basically defending the drug company for their actions (or inaction, in our view) because BioMarin is a small organization and just beginning to make money.
I don't find this to be a valid point for a variety of reasons. A bit of work and support on their behalf would have had many positive reprocussions for the company and would have made our very difficult and painful journey easier to handle. But we were left alone to fight our battle for approval of the drug in Canada and we were left alone in our battle with the Provincial government for funding. In the end, BioMarin got what they wanted - their product in Canada without having to apply for approval (at a high cost to them) AND provincial funding for a lifetime supply of their product. And they didn't have to do any work! Sweet deal for them.
Of course, we would do it all over again of we were forced to. Our children are our life and we would fight forever for them. But again, a bit of help from BioMarin would have made our ordeal easier and it would have provided them with a warm news story to promote. And they could have felt good about their patient-friendly company and could have advertised how important working with families is to them. Too bad.
In the past week, we've had contact with two other families that are affected with MPS VI. One woman is in Belarus and is 30 years old. She's currently working on her PhD and still awaiting treatment. The other boy is 7 years old and is located in Portugal. He's also still awaiting ERT and we're thinking of them often. We hope their governments will begin to support them and help them get the treatment they so desperately need. It makes us feel fortunate that we live in Canada, where there is potential to change government policy.
Our friends in BC, the Purcell's, have also started treatment! Trey has had two treatments now, and they are getting some great media attention. Please stop by to visit them at www.treypurcell.com and sign the guestbook with your congratulations and support.
In March, Ellen and our Foundation treasurer, Lynn Gallupe, will be heading off to Washington for the NIH sponsored scientific conference on MPS Diseases. The top scientists and researchers in the world will be on hand to present their projects. It will be an opportunity for us to find out where the most promising research is being completed and give us an idea as to where we would like to direct our research dollars. It will also give us an opportunity to give some researchers information about our Foundation and about our grant application process.
We've just finished drafting our Request for Applications and will be sending it out to grant candidates soon. We hope to provide an $80,000 or $100,000 grant in the spring.
That's about all for now, although I'm sure there's more to update. Remember, if you know of any runners or walkers that would like to participate in the National Capital Race for The Isaac Foundation, send them our way ASAP!
The photo above was shot last month. It's Isaac with his brother Gabriel. They are so cute together!
The Isaac Foundation