Petition – Quebec Funding for Vimizim

Hi Everyone,

Sorry for the delay in posting, I’ve been on the road non-stop meeting with patients and families, and working hard to ensure that reimbursement for treatments for rare diseases is forthcoming for everyone that needs it through this country.

I wanted to share a petition, with hopes you can drop in to sign. It only takes a moment, and the voice you add in that moment can make an incredible difference.

This is a french petition, asking the government of Quebec to fund access to Vimizim for patients with MPS IV. Below is a rough translation for English speaking visitors:

Why it matters

VIMIZIM is a drug that already allows multiple people with Morquio syndrome to live a full life with dignity. INESS has refused reimbursement of the drug, which is too expensive for people to access without help. In Quebec, there are many families in need of this treatment in order to participate fully in society.  Furthermore, administered at a young age , this treatment can drastically change the life of a child, or even save his life.

Please visit and sign the petition here!

Thanks in advance,

A.

Drawing Hope – Morquio A

What a great project!

Luke and Zane Braun, two boys from Ontario battling Morquio A Syndrome, were featured by photographer Shawn Van Daele for his DRAWING HOPE PROJECT.

Luke and Zane were asked to complete a drawing showing what life would be like for them after receiving ERT treatment with VIMIZIM.  Shawn then takes that drawing, does a photo shoot with the boys, and hits his home studio to edit his subjects into their “dream”.  The results are stunning!  See the images below and visit Shawn’s page over at www.drawinghope.ca.

Luke, Zane, and Shawn’s journey with the DRAWING HOPE PROJECT was featured on CTV news as well!

Read more

CONTACT US AND SHARE YOUR STORY!

We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Morquio A Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!