Its time to get international! And I must make a confession; I have just literally got back 2 days ago from the rest of the “big wide world”. And I am inspired to incorporate that into this edition in “a place for us”. My travels were not just a bunch of random wandering, stumbling without aim or point. I was able to attend the 2014 Retina World Conference. As some of you may already know, I was also able to report to the rest of the world, the wonderful things that are going down right here in little old kiwi-land. So I will keep you upto date with all the comings and goings of such a rad event! I met some crazy cool people with similar stories, so I shall dip into the pool and share with you my main man Feres’ story. A totally insane guy from Sweden, tackling the same things we do here in NZ. Lil Char is totally dim-sim’d and waffled out, but check it out, she is back to the good stuff for some of the greener options she went with. I am sure it’s all beneficial and she has done the hard yards to keep our carrot count up! Whether it’s vile or you just in denial, I bring you NZ style. And straight from the land of the conference itself, we take a look at the sweet threads of Miss Pinky Fang (featured in issue 9’s “a place to inspire” and just a darn good lady). “A place to meet” and being in the heart of winter and just coming home to Hawkes Bay, naturally it’s just not cold enough so we have made the decision to battle the elements down in CHCH. So keep your calendars clean next month for Friday the 5th of September, and because nothing is ever set in stone keep your eyes on the Facebook page for all the deet’s. In the news, it’s all good! I have a report from my favourite speaker Gerald J. Shader, PH.D. with the “Present and Future Treatments for RP and Other Rare Retinal Degenerative Diseases”. It’s some pretty exciting news if you can handle a few technological words and a bit of scientific diagnostics, AHHH what am I talking about I don’t know about that kind of stuff, you will just have to read it and be excited like I did. Alas that’s enough babbling from the editor, let’s get into some good stuff!
A place to inspire.
FeresMourall - Sweden
In 1999 I turned 16 and the highlight of that year was that I was going to start learning to drive with my dad. I had been wearing glasses since the age of 7 and was pretty nearsighted, but this time I needed to see a doctor to see that my sight was good enough or not. I’ve never been much of a car nerd, but needless to say when they told me I couldn’t see good on the sides and I had something called tunnel vision and therefore wasn’t able to drive I broke down. I remember my mother having to call the doctor because all I was doing after getting home was crying and she couldn’t get a word out of me. About two years later we found out that it was RP.
In late 2011 I moved back to my hometown of Borås after living 6 years in the nation’s capital Stockholm and also in Malmö in the south. During those years I had been aware of my sight problems and I occasionally went to the doctor but I pretty much ignored to address the pink elephant. Not proud to admit it, but I also tried to forget about the whole thing by self-medicating the pain with drinks and drugs. Anyhow, well back in my old hometown I started to attend different meetings and even though I had admitted to myself that I had an eye disease years ago I finally started to really face the reality of living with it.
So where does it leave me now? Well today, I am studying International Business and Marketing and I will be done with it in May 2015. I am aware that I do have RP, Gyrate Atrophy to be more precisely. Can this be something that hinders me from working in the future or forces to me to change my job? Absolutely! However Swedish laws allow me to have some financial help because of my sight handicap which is somewhat reassuring. I have for a few months started exercising more, stopped smoking and eating less protein. I do not follow the diet very strictly, but the Ornithine levels have actually become lower which hopefully will make my tunnel vision and sensitiveness against bright lights to not increase that much and that fast.
The biggest thing however is psychological and that’s why I’m ever so grateful to my girlfriend and number 1 supporter Sahra. Without her undying support I really don’t think I would have the strength to write this text. So I guess what I’m saying is that life will be hard and it’s alright to cry sometimes, but never give up and don’t forget to be nice back to all who got your back. I am always going to have bad sight and wear shades indoors, but science is always going to be knocking down doors. I’ll leave you with two of my favorite quotes the first one by Oscar Wilde and the second one by The Rolling Stones.
“We’re all lying in the gutter, but some of us are looking at the stars.”
“I know it’s only Rock N’ Roll, but I like it.”
FèresMourali
A place to look the part.
Well hot diggidy dog, the Fangster is back! From the moment I met this chic, I knew it wouldn’t take too long till she would grace the pages of “a place for us” again, and it only took 3 issues and here we stand, in oar of the sickest label available to the (soon to be) NZ market. Soon to be you might ask? Well no it hasn’t hit shelves just yet. This is a pledge to get the ball rolling! For those un-familiar with pledgeme.co.nz, it’s a site for anyone with an idea. Any Idea! For example: My name is Zane, I want to create a pokemon themed collection of mosaic rocks, I know it is such a spectacular idea! So instead of me spending my life savings and creating these technicoloured poke rocks and trying to sell them, I create the concept and post it to pledgeme.co.nz (some account setup stuff is involved), and without spending a dime, people pre-order my geodudes and pikachus! And because everyone will love my rocks, and I will easily reach my target, I receive the amount pledged (+ more if it goes above and beyond) and I can produce my winning concept to deliver to the clients (pledgers) :D But if by some weird reason my pokemon mosaic rocks don’t reach the target, the good people receive their money back, no hard feelings. SOOO when a local legend like Pinky Fang, pledges to make rad t-shirts/shirts. We get on that buzz! Because they will not disappoint.Pinky is an amazingly talented sight impaired artist who only recently got her first cane. Though that hasn’t stopped this Wellingtonion in her tracks to become a kiwi great! I believe as a community we should support our own and get behind her. Though let’s leave the pledging to the very humble, Pinky herself peace.
Hello! I’m Pinky, I’m an artist, illustrator and designer from Wellington.
Currently I am undertaking an exciting campaign via NZ crowdfunding platform Pledgeme.co.nz. I’ve designed a bunch of rad tees, shirts and blouses with my illustrations on them & am raising funds to get them printed and to New Zealand.
In return for pledging, you receive first dibs on the apparel itself. I had heaps of interest for my pickle print shirts when I first made prototypes late last year & my campaign is building slowly but surely.
Check out the goods here and pledge to own an original piece of art to wear! Link here:
And check out all my other work and projects here: thank you!
Lil Chars Good Stuff.
Coconut – Lemongrass Shrimp
Ingredients
1 can (14 oz) coconut milk
2 stalks lemongrass, about 4-6" each, ends trimmed, coarsely chopped
1 large shallot, coarsely chopped
3 garlic cloves
2 thick slices fresh ginger, peeled
2 Tablespoons Sriracha
zest and juice of 2 limes
25-30 large shrimp, peeled and deveined
1 Tablespoon extra-virgin olive oil
snow peas
rice
Directions
Place coconut milk, lemongrass, shallot, garlic, ginger, Sriracha, zest and lime juice in a blender. Puree until smooth. Reserve 1-1/4 cup of this liquid.
In a large bowl, pour the rest of the coconut puree over the shrimp and let marinate for at least three hours in the refrigerator.
(To get the nice char marks on my shrimp I brushed my grill pan with peanut oil and grilled them for a minute a or two over high heat. But you can just cook them in your skillet if you do not have a grill pan or want to skip this step.)
Heat olive oil over med-high heat. Add snow peas (as many as you like) and saute for about two minutes. Add reserved coconut puree and let it cook for about a minute. Since your pan is hot, the liquid will bubble. Add shrimp and saute until cooked and opaque looking, about 3-4 minutes (less time if you had them on the grill pan first).
Pour mixture over rice. I served this with a combination of jasmine and brown rice but you can use whatever kind you like.
Coconut milk is an amazing hidden gem that not many people tap into. However being such a health nut I use it in just about everything! I wrote about it a few issues back so please don’t think my hidden agenda is to turn everyone to the coco, but in moderation it is a super drink/ingredient for the eyes. Even just replacing regular oils for coconut oil would be a massive leap in the right direction, super easy to do and really yummy.
Lemongrass is another one of those foods that’s “high in antioxidants”, you have probably heard that a million times, reading health articles for the eyes. But it’s true and you can’t drum it home enough.
A place to meet.
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 groups 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.
A place for good news.
Ok so here is the presentation shared by G Chader. He’s such a champ and this was such a good simplified version of the treatments available, it’s a few words on the word doc count, but if this report isn’t something to get excited about, you can’t be losing your sight! No edits here :D
Congress Highlights: Present and Future Treatments for RP and Other Rare Retinal Degenerative Diseases
Gerald J. Chader, Ph.D.
More and more is being understood about the basic genetic mutations and factors involved in RP and the rare retinal degenerations as well as the biological mechanisms that lead to photoreceptor cell degeneration. For example, it is estimated that about one-half of the genetic mutations causing the different forms of RP are known as well as many of the gene mutations that can lead to specific types of RP such as Leber Congenital Amaurosis and Usher Syndrome. We also now know much about the cell biology of retinal degeneration that leads to photoreceptor death . Techniques such as molecular genomics, proteomics, DNA analysis and clinical diagnosis have all seen major advances in recent years. Armed with this genetic information and knowledge of basic mechanisms of photoreceptor cell death, strategies have been designed to slow vision loss or even restore functional vision. Clinical Trials are now in place or being planned for RP and the rare degenerations. General strategies involve 1) Gene Therapy 2) Pharmaceutical Therapy 2) Photoreceptor/Stem Cell Transplantation 4) Nutrition 5) Optogenetics and 6) Retinal Prosthetic Devices.
A) Which Therapy might be effective (or not)?
Before considering a specific treatment, consideration must be given to the condition of the retina in the patient’s eye. For example, do some of the photoreceptor cells yet remain or are most or all dead? Photoreceptor cells are important because they capture light and convert the light (photic) energy entering the eye into an electrical signal. Photoreceptor neurons then pass the electrical signal to underlying secondary retinal neurons which further process the signal and pass it down the optic nerve to the brain for final synthesis into a visual image. Functional photoreceptor cells are thus crucial in the visual process. Gene therapy or other techniques targeted to photoreceptor cells will not be effective in restoring vision if the photoreceptors cells are dead.