First, I will get the bad news out of the way. Ontario still will not fund Elaprase for Andrew Lanese, a boy with MPS II whose family has been fighting for monthes to get the drug for their son. And at this point, Ontario has made a preliminary decision to deny Elaprase to all of its citizens with MPS II. We hope they will reconsider. Especially since we (Vancouver) are hosting the International MPS Conference in June 2008. What a sad statement that our country will host this international MPS conference, but we do not have an Orphan Drug policy and we will not fund one of the drugs that will help save MPS patients’ lives.
I will take this opportunity though, to once again thank our government for coming through for Trey. Watching other families (we are also in close contact with a family from Montreal who is fighting hard to get Elaprase for their son) go through this battle, as well as seeing everything that Elaprase is doing for Trey, I cannot be anything but grateful. We are so thankful and appreciative that our British Columbia government decided to fund Elaprase for Trey. They have saved Trey’s life. I don’t know of anything there is to be more grateful for.
And in really cool news, I have gotten a few emails from Stargate fans. Where to start…I think it began when Ryan first started on Stargate Atlantis a season and a half ago (he’s the Steadicam Operator on the show and the cast and crew are tight knit and kind and wonderful), but it got much bigger leading up to and after our “Tacos for Trey” fundraiser this past May. Atlantis cast and crew came to our fundraiser and donated thousands of dollars. And the money kept coming in after.
Other acts of humanity and beauty have followed… one crew member from the costume department beaded a “Got Hope” shirt for us, which we have since framed and put up on our wall. Then last Friday, Trey won “$5 Friday.” For those of you who don’t know, every week, crew (I’m not sure about cast) puts $5 in a pot and whoever name gets drawn wins the money. I found out Friday after Trey won (I wasn’t sure how Trey could win, since he’s not a crew member) that a number of crew have been putting Trey’s name in the draw instead of their own, week after week. So Trey won over $300 last week, all of which will be donated to the MPS Society’s MPS II Fund. One crew member gave another an old computer and in payment, the person who gave the computer asked that a donation be made to the MPS II Fund. This kind of thing is seeming to happen regularly.
A month or so ago, Ryan also found out that the production, cast and crew decided to auction off on Ebay, some autographed North Face duffle bags used during the making of the movie, all the money made from which will be donated to the MPS II Fund. Wow.
The even neater thing is, I have been getting emails of support and people telling me they are making donations for Trey’s cause as a result of this… from all over the world…Liverpool, Omaha… I think it is so awesome and wonderful and generous what the Stargate cast and crew has done for us. It makes me cry. They have helped us raise awareness in a way that we could not have done alone (something about fame…) and they have helped us raise thousands of dollars towards finding a cure for Trey’s disease. And many of these people I haven’t met or spoken with for more than 5 minutes. It really does make me cry. And I know Ry’s shed a few tears saying thanks to everyone at work.
So thank you to everyone involved with Stargate… cast, crew and fans, who have helped us in our plight to raise awareness and funds for MPS II. Your generosity is most definately noticed and appreciated. I have never met such a large group who has no vested interest, with such big hearts. Thank you!!!