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Help me get to LA to learn about NMO - the condition that changed my life!

  • Covid-19

      9 June 2020

    To everyone who donated to help me get to Los Angeles for the NMO Patient Day, I want to say thank you again!

    Unfortunately this years' event was not to be. I booked flights and accommodation and found out the evening before Mum and I were due to leave that the conference had been cancelled due to Covid-19. At the time it was a disappointment, but I knew it was the right decision on behalf of the Guthy Jackson Foundation.

    Now I feel very grateful that we didn't go. Although I was unable to get a refund on accommodation and my flight, but they have said the credit will be held until late next year.

    Only time will tell if this is enough time for the USA to recover and for it to be safe for me to go there.

    In the meantime, I am just grateful to be in New Zealand, and that things are getting back to a new normal for us. I look forward to one day attending the conference, but for now, we'll just watch, hope and pray for everyone over in the US and areas badly hit by this pandemic, ESPECIALLY the people with NMO who are home bound until it's safer to return to normal.

    Amanda xx

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  • Not long to go!

      23 February 2020
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    My page is expiring soon, but before it does I just want to say thank you from the bottom of my heart to everyone that has contributed towards me being able to go to the patient day! With my Givealittle fundraising, generosity from family and friends and a travel grant that I so unexpectedly was awarded, this trip is now possible! Mum is paying her way and joining me, and we are heading over on 4th March. Thank you so so much for helping me to have this opportunity!

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  • Updated goal!

      25 January 2020

    I've had some amazing news this week that I've been privileged enough to be awarded a travel grant through the Guthy Jackson Foundation, who facilitate the NMO Patient Day. They have paid for my return flights to Los Angeles which is absolutely amazing and I'm so so grateful! Accommodation for the time I am there will be about $2400, so I'm hoping to raise as much as I can towards that. Feeling so grateful for the generosity I have received so far, and excited to have the opportunity to meet other patients with my condition, to learn alot and to network! <3 Thanl you all from the bottom of my heart!

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  • Neurology Appointment!

      13 January 2020

    I had an appointment with my Neurologist on Friday. I didnt have any follow up MRI's or blood tests this time and he couldnt tell me much that was new.

    It can be really frustrating at times, to not have answers, to be told that the medication plan is kind of a 'trial and error'. What I've really learnt over the last year is that I really do need to learn as much as I can myself, to read and research, and to take control of my condition and treatment.

    It would mean so much to me to be able to go to this Patient Day - to gain knowledge on new clinical trials and upcoming treatment advances, and to gain more insight from people around the world who have the same disorder, and the Professora and medical experts of course!

    Thank you so much to those who have already contributed, you are all amazing!!

    And for those who haven't, if you can consider it, I'd be so so grateful <3 THANK YOU!!

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  • An early new years night

      31 December 2019
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    It has been a year of up and downs adjusting to this new life of having to learn to slow down and take it easy, plus the multitude of medications I'm taking and their side effects.

    I've been having alot of tiredness, headache, eye strain and pain in general today so it's an early night for me. To those that are out celebrating though - be safe, have fun, and may 2020 be awesome for you all!

    Having this illness has helped me to really appreciate the kind, supportive, loving people I have in my life. Thank you!

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  • Thank you all!

      18 December 2019
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    Thank you so much to everyone who has put their hard earned money towards my cause so far. It means more to me than you could imagine!

    I've been on a bit of a rollercoaster for the last few months -any of you know that I've been tapering off Prednisone, which has been a rollercoaster ride to say the least. This week though, I reached the milestone of 5mg! I started the year on a short burst of 1000mg, then 60mg, and 40mg for about six months.

    However, I need to fight the urge to taper quickly to be off them, because I most definitely do not want a relapse! I like to be able to drive, and work, and cook, and walk my dog when I have the strength to. And of course, I want to be well enough to make the big hike to LA!

    Patience is a virtue... I keep telling myself this!

    Merry Christmas to you all - have a safe and happy time with your loved ones. Cherish every moment!

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