Back from Paris - Retina Youth is growing at such a rapid rate, and the response has been so positive. In the last 2 years we have started youth group in both Auckland and Wellington, with young people from all backgrounds coming together with 1 common denominator. Friendships have blossomed! So just like the parade, were taking it back off Auckland and heading down to Christchurch! Our first youth meet up in the South Island is entering into some exciting territory. Cold! But exciting! So make sure if you’re in or around Christchurch on the 5th of September, come freeze ya chops off with the crew! For all the details jump onto our facebook page Updates to come :D


It would almost be criminal for me to head to Paris and meet with sight impaired youths from all over the world and not report on what went down! And boy do I have a lot to report (maybe report is a tad to formal, for the style of meet up us youths have, I’d say it is more “the goss”)! So, on things kicked off on Thursday 26th of June with a very casual meet and greet in the lobby of the swanky Pullman Paris! Awkward handshakes were soon disrupted by jokes and laughs from the Swedish lads, and within the hour everyone felt as though they had known one another for years! We chatted away while the day’s excursion was planned out by the somewhat un-prepared French. Our day tour turned into an afternoon tour of the city via bus and boat. This was a great way to truly appreciate the history and beauty of the most romantic city in the world! And it was such a treat to be able to share it with such a nice bunch of young people! In attendance was 2 guys from Sweden, 2 ladies from Sweden, 1 girl from Amsterdam, a lovely couple from Japan, and 2 chaps from Norway. This was the main crew throughout the whole event with others drifting in and out over the weekend. Friday was steady, with a nice relaxing morning with the wife, then straight into some heavy program presentations with Retina NZ president Fraser Alexander. After lunch we heard from various speakers about, Future Gene therapy, Examples of ongoing and upcoming gene therapy trials, therapeutic breakthroughs: cell therapy, neuro protection, implants, pharmacology, optogenetics, it was extremely interesting and despite being super technical and scientific, the parts I could pick up on, it all sounds very promising. Saturday was much the same as Friday afternoon! The conference was at the Pullman in the presentation rooms. There was around 4 different rooms all going off at the same time with 1 room being dedicated to scientific speakers, another for day to day living, another couple of smaller room for more dedicated events or Retinal disorders. We flitted around each room gaining information from a vast range of speakers! A highlight (for me) was a report from Brazil where the speaker went so far over her time allocated they had to drag her off the stage! Saturday night is all class, and is a very special evening for attendees of the conference. It’s the gala dinner, A chance for all us youths to dress up real sporting and all perve on one another! No really it is a great way to talk with some really interesting people, and throw off a few laughs amongst the youths. The end of the day left us with some good news, with the 2018 world congress being awarded to NZ! Well-done Fraser for such a sweet presentation! Sunday was also very important day for us. I was to present on the progress of retina youth NZ, and tell our story to date (presentation can be seen on the retina youth facebook). I was super nervous to be in a room of around 50 attendees, standing in front of a projector, mic in hand. I don’t think I disappointed, as there was a lot of positive responses to the presentation. And a good report went through the ranks. I was then approached by delegates from Sweden and France to further progress the youth groups in those countries. So was nice to see that NZ is leading the way in the Retina world. With the hard work done it was time to sit back and enjoy the festivities of the event, with very amusing presentations from the Chinese and an inspirational talk from the head of Retina International herself Christina Fasser. At the end of the event, it was a few tears as we said goodbye to the new friends we had made. But the chocolate gifts we got from the swiss made it a little easier to swallow. Heading away from the event, there was so much to reflect on. And if I had one sincere moment in this newsletter, it would have to be in this statement, “everything is looking good”! A report shared by Gerald J. Chader, Ph.D. illustrated how close we are to finding a way out of the darkness. I have shared it in this months “a place for good news” its long but well worth a read! I hope I have given you a brief outline of the comings and goings of the youth conference, and you can take some joy from reading about the experience.



whats new?

March - April 2014 - So recap of whats been going down the last few months. We had a mean as youth meeting in wellington, so we take a look into that. A few picturoonies and a few good yarns around the Mexican table. We have been updating the facebook regular. So make sure you jump on the www and take a look at The international youth meeting is well underway with the organisation process and that will take place in late June :D So next issue should be filled with heaps of information around that event, yay cant wait! Then not to far after that we have the youth meeting in CHCH, so keep your eyes peeled on facebook for the details of that weekend :)

I look forward to growing the Retina youth team over the next few months. Were looking for a hands on event organiser within the Retina Youth community. Its all pretty low-key atm, but I am sure I will have more information on this in the coming months :D

Sadly there will be no “a place to inspire” story this issue. It can be hard to find young people who are willing to share there heroic stories of coping with a Retinal Disorder. It takes a lot of input from you guys the readers. So if you would like to share your story please flick me an email at :D We can all be heroes in the way we deal with our sight impairment, and what may seem minor to us can be a massive help and inspiration for others. So please please please send us your stories in


Feb 2014 - What a month we have had! January was such a dozy! Big thanks to the team at parachute for helping Retina NZ youths get along to thier festival! The latest newsletter is now out! This can be found on the Archives page, and it is jam packed with heaps of good stuff to keep you invested in Retina Youth NZ!


Announced this month is the Retina International Youth Congress in Paris! So be sure to check out all the details on that here, or contact Retina Youth NZ Rep Zane Bartlett here.

















We have the ZM color run at the end of next month and that is going to be massive! All the details are now in for that! So check it out >


Retina Youth NZ, Wellington – 30 March


Ok so here is the plan so far for our first meet up of 2014!


8am - Quick meet and greet, coffee @ Wicked Espresso, 458 Fergusson Drive, Trentham

10am - @ Trentham Memorial Park, The Start-line all ready in the RY Team.

7.30pm - Dinner @ Tequila Joes NZ, 43 Vivian St, Wellington


Accommodation and to get more info and register by emailing


The Colour Run™, also known as the ‘Happiest 5k on the Planet’, is a unique paint (it is actually coloured corn flour) race that celebrates healthiness, happiness and individuality.



Jan 2014 - Hohoho, Merry Christmas to you all, hold on... I'm too late, so … Happy New Year! So whats going on this month? Well TBH not a heck of a lot. There is like a million different festivals to attend, there is so much sunshine its just too crazy good to disrupt you lot. Alas, coming up we have a few tantalising events to tickle your trend buds. We have the parachute hook ups. That is coming around very soon. So make sure you are a part of that. All you have to do is email me to get your mate in for half price! BOOM a sick weekend sorted for you and a mate. We also have the - quarterly quail - as I like to call it, coming up. Which this time around is in wellington and we are going to be running the ZM color run/walk/fumble, there is no excuses not to be there! Im not going to bore you any longer, here is something pretty to look at.

June 2013 - Every so often, retina youth likes to catch up over dinner and a few drinks and just catch up! Our last youth meet up was no exception! Was an awesome night had by all. We had around 12 people turn up. All directly related, relative or supporter of someone with a retinal disorder. It was pretty special night, we had the crew from mobile eyes to talk about there amazing product. More on that can be read here. We had young people turn up from all over NZ. Including Napier, Taurunga, Wellington and of course Auckland. We hope to continue doing more of these evenings and will keep you posted. Check out a few pictures below.