First Annual Newsletter


Dear Supporter,

Our 1st Anniversary is just around the corner and it coincides with some exciting updates in our efforts to CURE AGU!

First, thanks to an outpouring of support from you, our Donors, we are so proud to announce that during our first year of operations we received donations and funding pledges in excess of $320,000 locally, and US$1 million globally.  That means we have reached 2/3rds of our initial Canadian fundraising goal and half of our global goal in just year 1. 👏👏👏
Besides fundraising, we have of course been working hard with our sister organization in the United States, Rare Trait Hope Fund, to set and meet our milestones for our clinical trial. On that front, we have truly amazing news!  The money raised to date has allowed us to enter into agreements to start production of the AGU gene replacement therapy.  VGXI, Inc. has so graciously stepped up and given us greatly reduced pricing on the AGA plasmid we will need to treat the kids. See The Press Release!
We are privileged indeed to work with this dedicated team.  As well, we have received bids from several viral vector manufacturers (the viral vector transports the replacement gene into the kids with one injection). We hope to finalize our production agreement with one of them early in the new year.
What’s a clinical trial without a research hospital? 🏥 We are SO excited to confirm that we have also secured a Gene Therapy Centre in the States to conduct the AGU clinical trial.  With the support of this dedicated and experienced rare disease team 👩‍⚕️👨‍⚕️ we are confident that better days for our AGU kids are just ahead.

Of course, we can’t continue to accomplish our goal of SAVING LIVES without your continued support. Please, spread the word.  Forward this newsletter to your friends and colleagues.  And, PLEASE DONATE!

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