CDR

19 Nov 2014
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BREAKING NEWS! TREATMENT APPROVED IN ONTARIO!

Sticky Post By On November 19, 2014

TREATMENT APPROVED! ONTARIO CHILD FIRST TO RECEIVE PROVINCIAL FUNDING/REIMBURSEMENT FOR VIMIZIM!

We have some very exciting news to share. A few months ago, we told you about little Ayub and our quest to have his treatment approved by the Ontario Government.

I’m thrilled to announce that Ayub will be the first person in Canada to receive full reimbursement for VIMIZIM, a new therapy approved by Health Canada in July and the first and only front-line treatment for Morquio A Syndrome (MPS IVA). This will greatly impact Ayub’s quality of life, and I’m proud to have played a small role in ensuring approval was forthcoming for him.

I’ll post some updates once treatment begins, and will continue working and advocating for the rest of the patients across Canada who need access to this therapy.

11 Sep 2014
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New Diagnosis in Ontario

Sticky Post By On September 11, 2014

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!

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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