Andrew Mcfadyen

16 Aug 2014
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Meeting With Heather Forsyth

Sticky Post By On August 16, 2014

Just a quick update…

I’m in Calgary meeting with Wildrose MLA Heather Forsyth.  Heather is the official opposition Health Critic, and one of (of not THE) best Health Critic in Canadian politics.  Heather works to do what’s best for Albertans, and has advocated for our kids suffering from rare diseases for a long time.

Last year, Heather was instrumental to ensuring that Aleena Sadownyk, a little girl from Alberta, received funding for her enzyme replacement therapy (ERT).  Without Heather, I truly believe that Aleena would still be fighting for treatment today.

Heather and I have met numerous times regarding Morquio A Syndrome and the recently approved treatment (ERT through VIMIZIM).  She believes, like us, that reimbursement for this treatment should be approved immediately.

In Alberta, there are 5 cases of Morquio A Syndrome.   With Heather’s help, it is my hope that all of these patients requiring treatment can begin as soon as possible.

Heather and I will stay in touch, and she’ll continue to play a big role in advocating for our patients.  I’m grateful to have her support, and I’m proud to call her a friend.

I’m heading to Edmonton on Monday to meet with PC MLA Stephen Kahn and the head of Pharmaceutical Funding and Guidance in Alberta.   I’ll update more as soon as I can.

 

14 Aug 2014
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New Website Launched!

Sticky Post By On August 14, 2014

It’s official – we’ve launched!

With the approval of VIMIZIM in Canada, the first enzyme replacement therapy available for Morquio A syndrome, we’ve received many questions from across the country.  Most prevalent among them is “What’s next?”

After speaking with many families, we thought it would be helpful to put together a website with as much information as possible about Morquio A syndrome in Canada, including information about gaining access to treatment throughout the country.

As many of you know, VIMIZIM was approved by Health Canada in early July, 2014.  That approval provided hope for families that they could finally access a treatment for their disease.  Clinical trial results are incredibly promising, and patients need to have access to that therapy as soon as possible.

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