New Diagnosis in Ontario

IMG_20140911_133205This beautiful little boy, Ayub (almost 3 years-old) was just diagnosed with MPS IVA (Morquio A Syndrome) today in Ontario. There is #HOPE for him because the treatment he needs has been approved by Health Canada. The only thing preventing him from beginning treatment ASAP is, once again, the issue of Provincial Reimbursement by the Ontario government.

We will be working hard to help Ontario gather the information needed so they can make the right decision for Ayub and his family, and we will do whatever we can to ensure that treatment begins ASAP!

New Website Launched!

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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