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.
Meeting With Heather Forsyth August 16th, 2014mcfadyena
This 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.
