Progress Being Made In Fight Against Muscular Dystrophy
please find below a letter from Barb Yanciw, MB & SK fundraising chair for Muscular Dystrophy:
Happy Friday Winnipeg Fire!
Attached you will find a thank you note from Owen MgGonigal. Owen has been our national Fire ambassador for the last 10 years and is currently receiving Spinraza treatments – last week we found out that he can now open the pantry door on his own! I have two little girls here in Saskatoon who have been receiving treatments and the youngest can dress herself again. It is because of the dedication and commitment from Fire Fighters that we have stories like Owen’s and a real hope for a cure. MDC is working diligently to increase access to this medication for Owen and other individuals by:
1. Working with key decision makers and stakeholders that include government, private insurance companies and pharma so Spinraza can be fully accessible
2. MDC made a patient submission, working with over 600 registered clients and their families affected by SMA, to the Common Drug Review and INESS (drug review process in QC) to inform Health Canada the impact of this medication. We have just received new information (this week) that Biogen, the pharma supplier of Spinraza, has made a new submission to the Common Drug and INESS for Spinraza. The new submission is focused on reimbursement for patients and broader access for patients affected by SMA Type 1, 2 and 3.
3. MDC’s Service Specialists are working diligently with families affected by SMA in accessing this medication through our system navigation program.
This work would not be possible without the commitment and dedication of Fire Fighters across Canada.
From all of us at Muscular Dystrophy Canada, thank you for all you do.