April 2, 2007 mcfadyena

A grant to fund & ERT updates

We have a grant to fund!! The Canadian MPS Society has agreed to pay half of a $40,000 grant to Dr. Potter at McMaster University who is doing gene therapy research in MPS II, if we can pay the other half. His project has support from well known MPS II researchers around the world like Dr. Muenzer. We’d also like to give a $4,000 summer studentship grant to a student in Dr. Potter’s lab who will be part of the larger gene therapy project as well. One of the reasons for funding summer studentships is to engage students in MPS research in the hopes that they will choose to continue with MPS research once they become doctors. If you have more questions about either of the grants, please feel free to contact myself or the MPS Society, 604-222-2767 (me) or 604-925-5130 (the MPS Society).
So we have a goal. We want to raise $24,000 for the MPS II Research Fund between now and “Tacos for Trey.” If you can help us do this, we’d appreciate it! The money is going straight into research that we are very excited about. I am so glad that through our MPS II Research Fund we will be able to fund an MPS II grant this year. Had we not decided to have this fundraiser, it is quite possible that the only grant going out this year would have been to Lorne Clarke from UBC, doing biomarker research in MPS I. His research will  eventually apply to all forms of MPS (we had a visit from Dr. Clarke today, so Trey will soon be a part of Dr. Clarke’s biomarker study), and from my understanding it will help diagnose severity as well as help with prenatal diagnosis, but the more grants we can fund, the more research that will be done, and the closer we are to finding a cure.
Last week Trey had infusion #8 and today Trey had infusion #9. Everything is going really well and he continues to have no reactions. Trey’s tummy is still getting smaller, his skin feels softer, his joints are loosening and we also notice a difference in his facial features. It’s absolutely great.


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