Spinraza update
Winnipeg Health Minister Meeting – SMA Demonstration
Roche update
Rebecca Run 2018
SMA Camp West
Florence and Charlie’s 10K to end SMA Fundraiser
Canada’s National SMA Awareness Day
Edmonton Walk N Roll
Swing for Hope golf tournament
Cure SMA @ Little Rock Farm Fundraiser
Hope for Lilah Fundraiser

Spinraza Update –

Biogen has resubmitted to CADTH and INESSS as an agreement was not reached with our provincial governments and the pCPA through the negotiations. We will be providing patient input on behalf of the SMA community. A new survey will be circulated within the next few days. It is absolutely imperative that you participate in this survey so we are able to provide the impactful information we gather.

It is important to also note that even though a new submission has been entered by Biogen, the negotiations can continue from the first.

Cure SMA Canada continues to actively advocate for access for all patients affected by SMA in Canada. We will not stop fighting until all of our patients are approved for treatment!

Winnipeg Health Minister Meeting –

SMA Demonstration – Canada’s Health Minister’s annual meeting which was held in Winnipeg, was a perfect opportunity to have the SMA community’s needs heard and seen. SMA families descended upon Winnipeg from coast to coast. We had a great deal of media coverage and were told that the SMA’s fight for access to treatment was given time on the Minister’s agenda. Thank you to the families that came to advocate for treatment for all. You helped to make a valuable impact on those that are in the position of making the decisions that will affect us all.

Roche Update –

Please click on the link below to read the latest update from Roche about their clinical trial RG7916.

Rebecca Run 2018 –

This year’s Rebecca Run was a great success! Thank you to all the participants, all the families who came together with their teams for this very important fundraiser! Thank you to the organizers and all the donors!! This year’s race raised over $115,000!!!

SMA Camp West –

19 families gathered in Hope BC for the annual SMA family camp West. They had a wonderful time together, hiking, kayaking, making crafts, campfires and more. What a great experience for these families. Also, a wonderful opportunity arose with a reporter coming to camp to film the families as they spoke about the need for access to Spinraza. Stay tuned as those videos will be released shortly.

Florence and Charlie’s 10K to end SMA Fundraiser –

There are 2 joint fundraisers that will be held in Vancouver. Come join the fun and bring your friends and family!

August 10 at 6 PM – 11 PM Classic Rock at Big Rock! SMA Party & Silent Auction

301 West 4th Avenue, Vancouver, British Columbia V5Y 1G9

THIS IS A CLASSIC ROCK SILENT AUCTION PARTY HOSTED BY FLORENCE + CHARLIE’S 10K TO END SMA WITH DJ MATTY C. IN THE NEWLY RENOVATED BIG ROCK URBAN BREWERY. PROCEEDS TO CURE SMA.

TICKETS INCLUDE A BEER + BURGER/VEGGIE OPTION AVAILABLE. HAPPY HOUR PRICES ALL NIGHT LONG!

SILENT AUCTION ITEMS PROVIDED BY THE FAIRMONT, THE HILTON, YEW AT THE FOUR SEASONS HOTEL, HAWKSWORTH AT THE GEORGIA HOTEL, FINE FINDS YALETOWN, ABSOLUTE SPA, EARLS YALETOWN, HURRICANE GRILL, MED BRAND MICROBLADING, KATS DIVINE PHOTOGRAPHY AND MORE!

To register please go to
https://www.facebook.com/events/486857158437342/

2. Florence and Charlie’s 10K to End SMA Race Day – August 19
This is a special 10 km run/walk event to promote awareness and to raise funds to end SMA (Spinal Muscular Atrophy). The event is in honor of Florence Marigold Evanow who recently lost her battle with SMA at the age of 3, Charlie-Anne Ehlert now 6 years old, and the families affected by SMA.

All proceeds for this event will go to support families affected by SMA and research. We hope you’ll join us! For more info on this event, please go to: http://charlies10ktoendsma.com/

Canada’s National SMA Awareness Day August 18, 2018
On August 18, Canada will hold its annual National SMA Awareness Day. On this day, from coast to coast we will gather with our families and hold candles in a group for one minute of silence. During that minute we will send our love up to the SMA angels, we will remember their loved ones, holding them close to our hearts. We will remember we have a close community supporting each other, here in Canada. We will vow to keep fighting for the SMA patients, until we can celebrate the moment we hear “CURED SMA”. Until then, we vow to support each other, and continue to do our part to find a cure. We will feel the strength in the moment, realizing we aren’t alone, and together we are stronger. Please share your pictures on the Cure SMA Canada Facebook page!

Edmonton Walk N Roll – A very big thank you to Hali Harapchuk who held her annual Walk N Roll for SMA in Edmonton, Alberta! Thank you to the families and friends that attended! Its because of people like you who make it possible for Cure SMA Canada to support our families! Hali holds this fundraiser in memory of her beautiful angel Kaitlyn.

Swing for Hope Golf Tournament – The Swing for Hope Golf Tournament was started by Liz and Dale Holyome in honour of their sweet daughter Giselle. The golf tournament continues in Liz and Dale’s memory in the desire to fulfill their dream of finding a cure for SMA. Thank you to the most compassionate and generous organizers, donors and attendees who make this fundraiser one of the cornerstones that Cure SMA Canada stands on. Together we will find a cure!

Cure SMA @ Little Rock Farm – Eddie and Jenna Stewart are holding a super fun fundraiser on September 29 at the Lombardy Fairgrounds in Smith Falls, Ontario. Come out and join the fun! Make a difference for the future of SMA and have a great time doing it! For more information and to buy tickets, please go to:
https://www.facebook.com/events/1861986714111193/

Hope for Lilah Banquet and Fundraiser – Eric and Nicole Lamont from Windsor Ontario will be holding this fantastic fundraiser in honour of their beautiful daughter, Lilah, on August 31, 2018. Funds will be directed to SMA research. Please support this event as it will be making a difference for all of us!
Please go to the link below to find out more and to buy tickets!
https://www.hopeforlilah.com/events

What’s Next?

Next we continue to advocate for access to treatment as our first priority. We must continue to support the big picture of access for all. When we splinter to fight for individual needs, we lose the strength of the needs for the group. As with any battle, especially when it comes to our health, it is difficult to stay focused on the bigger picture. We have been working hard to find a treatment for SMA as a group, we will continue to fund research for all patients with SMA. We are fighting for access to one developed treatment, more will one day appear on the market. We must remain united as we have much more strength as a group need and group voice. Not only for this one treatment, but for this disease and for rare disease in Canada.

Click here to see the Roche SMA community update