I’ve had a weekend full of MPS Society meetings: a tour of Dr. Lorne Clarke’s medical lab at BC Children’s hospital where he does research on MPS (bone and joint research, biomarkers, and more) in mice, annual general meeting, board meeting, and board development meeting! It was great. Dr. Clarke did a talk on MPS research, how it’s going and where it’s going. That was fascinating because what it all comes down to is that there is still so much unknown. GAGs build up in the body because of the missing enzyme in kids with MPS, but it is not the GAG storage that causes all the damage. The GAGs lead to problems in cholesterol and other bodily functions that I can’t recall (I had Sadie with me and she did not let me take notes!), which is what actually leads to damage. Dr. Clarke also talked about how related diseases are to each other, especially genetic and rare diseases, which has led to medical centers beginning to have open concept research labs so that researchers can talk and interact with one another. In the brain of a child with MPS III (MPS III affects primarily the brain), their brain appears almost exactly like that of a person with Alzheimer’s. I knew some of this stuff, but hearing it again always gets me excited to give away money for more research.
So with that said, yesterday, Ryan, myself and the board approved giving a $50,000 research grant from the MPS II Fund to Dr. Muenzer at UNC, Chapel Hill, in MPS II gene therapy. I’ll put the lay person’s summary in the ‘Grants’ section, under the ‘Events & Donations’ tab. How MPS II Fund research grants are given is: the MPS Society issues an RFA (request for applications) for MPS II research. Our deadline for applicationms was July 30. After applications are submitted, they are sent to Ryan and myself and to the MAB (medical advisory board). In this case, three doctors reviewed the grants (always independently of each other) and submitted their reviews to Ryan, myself, and the board to make a decision.
I’m so excited about all this stuff i want to go to the International MPS Symposium in Australia in June 2010. But, Ry’s working, so I don’t know if I’ll be able to. Anyways, the weekend was great and has gotten me excited about ‘Tacos for Trey 2010’ on May 1 next year. I want to raise more money than ever!!
I hope you’re all well. I’m still riding the high from the information we got from Dr. Muenzer about Trey’s development and brain back in July. Best news of my life to date.
