February 27, 2008 mcfadyena

Steve Nash, Rare Disease Day

It is very timely that this Friday we (Canada) will be celebrating our first ever International Rare Disease Day (more about it below). This past weekend, Kirsten Harkins and Simon Ibell (the ED and a director of the MPS Society) met in Ontario with a number of families affected by MPS II. They met to discuss Ontario’s decision by Health Minister George Smitherman not to fund Elaprase and to discuss where they could go from here. I spoke with Simon last night and he said it was a very emotional meeting. These families are trying everything they can to receive funding for this drug, deemed safe and effective by Health Canada and many other countries around the world, but Smitherman continues to deny Elaprase to people with Hunter Syndrome. Simon, who was a part of the Elaprase trial, is in his early 30’s, and who has an attenuated form of Hunter Syndrome, has been receiving funding for Elaprase from Shire HGT, who developed the drug. The Ontario government was supposed to start funding Simon’s infusions this past December, but has refused. I cannot believe and am brought to tears by the disregard that George Smitherman (and others who were a part of this decision) has for human life.
Simon Ibell, and his mum Marie, are the main reason that Ryan and I survived Trey’s diagnosis with hope. When Trey was diagnosed, I felt like I was drowning. Simon is without doubt, one of the kindest and most thoughtful people I have ever met. When I met him, I thought to myself that if Trey turns out to be anything like Simon, I couldn’t be happier. And Marie got me through the diagnosis as a mum. She has been told 6 times that Simon had less than a year to live. She taught me to believe in Trey instead of listening to people’s words and opinions of all my son would not do. But George Smitherman apparently does not think Simon’s life is worth living. If Simon isn’t worth helping out, I don’t know who is.
DO YOU KNOW WHAT SIMON SENT TREY YESTERDAY? A PHOENIX SUNS JERSEY AUTOGRAPHED BY STEVE NASH (Steve and Simon are good friends). Trey loves jersey’s-basketball, football, hockey, if it’s a sports jersey, he’ll wear it!! Some days he’ll wear one on top of the other because he loves them so much. And our whole family is into sports (it’s a toss up who was more excited by the jersey, Ryan or Trey), and Steve is from Victoria which is just a hop, skip and a jump from here… a very cool gift. Thanks Simon!!
Here’s the info on Rare Disease Day: On Friday February 29, 2008 is the 1st International Rare Disease Day. It is a day about raising awareness of rare diseases and of people with rare diseases. In conjunction with International Rare Disease Day, is a “Day of Action” on Thursday February 28th. Patients, family members, and friends are traveling to Ottawa to present a proposal for a “Chance for Life” fund. This fund will support treatment for Canadians with severe and life-threatening rare disorders. And last but not least, look for CORD’s newspaper insert in the National Post on February 29th. Even if you just talk about how a rare disease has affected you or someone you know to someone who has never heard of MPS II (or any other rare disease), that can make a difference. That’s all for now!


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