Thank you for wanting to help out! Spinal Muscular Atrophy is a genetic disease and we must find a cure. Spinraza is a medical treatment that was approved by Health Canada on June 30, 2017. It is a treatment, but not a cure, so more research needs to happen. Emmett, Alisha, and Josh absolutely appreciate all of your support.
January 14, 2018: This is for all Canadians - if you're from outside of Canada this is likely not applicable. Write to your MPP, your provinces' Minister of Health, your premier and let them know that the new drug, Spinraza, needs to be made available to all Canadians with Spinal Muscular Atrophy. Right now a recommendation before the provinces is to limit the drug to a small minority of patients with SMA. Here's a link to letter templates that you can use: http://emmetts-journey.com/dailyweekly-thoughts.php?postID=114&article=Here%27s-what-you-can-do%21
We so value our family and friends and would love to hear from you. The comments section of the blog is an ideal way for you to leave a message for us or you can use email@example.com. If you wish to make a financial gift to support Emmett - and you do not need to - there are a few ways. You can use the paypal form that is set up below. If you prefer to use Interac Email Money transfer, you can send that to this address: firstname.lastname@example.org. These funds will go into an RBC account set up specifically for Emmett. If you prefer, you can make a deposit at any RBC branch with this info: Transit # 01050 Branch # 003 Account #5237862 - if the teller requests a name, let them know it's for Emmett's Journey.
If you use EMT or a RBC bank deposit, we won't have your email address. Please drop us a note so we can respond with a thank you.
Please support BC Children's Hosptial Foundation or Canuck Place. Of course, if you're outside of British Columbia we will be absolutely happy for you to choose to support a similar organization in your area.
Thank you for taking the time to consider ways to help fight SMA and to support Emmett, Alisha, and Josh!
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