Absolutely blown away by the fundraiser last night.
A massive thank you to those that worked so hard organizing the event, and to those that donated their time working the evening.
Thank you to the very generous sponsors that donated some amazing prizes and items for the silent auction.
A short video as people were still arriving:
Hello everyone,
I’m excited to invite you, along with your family and friends, to a quiz night at the Te Pae Convention Centre in Christchurch on February 25th.
For details on how to get your tickets, please follow the link attached https://events.humanitix.com/quiz-night-fundraiser-at-te-pae-christchurch
If you're unable to attend, we’d greatly appreciate it if you could share this with your community. Your ongoing support in spreading our story means the world to us.
Thank you 🙏🏼
From my family to yours, I wish you a very Happy New Year.
I hope you have all managed to spend some quality time with your loved ones over the holiday period.
Currently waiting to hear from a different cardiologist in regards to a medical trial of a different drug, unfortunately in trials there is a 50% chance of receiving a placebo. Still, that's better odds than most and a great opportunity. Fingers crossed.
I hope you are all having a fantastic holiday season.
On Saturday I was given an application link for a clinical trial by BMS (Bristol Myers Squibb) for a trial drug called Mavacamten. BMS have several hundred testing locations worldwide. Unfortunately, after completing the survey I was unable to qualify for the trial. No reason was given, possibly due to location, as the nearest trial was based in Sydney.
The hunt continues...
Have a fantastic New Year, spend as much time as you can with loved ones.
✌🏼
Thank you to all the very generous donor's.
Not much has changed in the 2 1/2 weeks since creating the page. We are still investigating the best avenues to source medication along with any possible alternative treatments.
Thank you all.
Jamie
