tag:blogger.com,1999:blog-11453019545934093112024-02-18T21:19:08.747-05:00The Ever Changing Perspective of EssceejuliesWe all see differently, this is my perspective.Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.comBlogger73125tag:blogger.com,1999:blog-1145301954593409311.post-72436266621236453782015-02-27T12:44:00.000-05:002015-03-25T05:21:24.928-04:00Video: Its 2015<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif; font-size: large;">The last time I posted on this blog it was 2014 and now it's well 2015. In the video below I give an update on what I've been doing and I also have a special little guest with me (towards the end). </span><br />
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<span style="font-size: large;">I'm not sure how often I'll be able to post videos so you can keep up with me on Twitter and Instagram. So if you are on those networks don't be afraid to send me a tweet or say hi. I promise I don't bite.</span></span><br />
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<span style="font-size: large;">Twitter: <a href="http://www.twitter.com/essceejulies">www.twitter.com/essceejulies</a></span></span><br />
<span style="font-family: Verdana, sans-serif; font-size: large;">Instagram: <a href="https://instagram.com/essceejulies/">https://instagram.com/essceejulies/</a></span><br />
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<span style="font-size: large;">I also try to pop in on the <b><a href="http://essceejulies.blogspot.com/2013/11/stargardts-stargardt-disease-macular-dystrophy-resources-websites-blogs-bloggers.html">Stargardt's support groups</a></b> on Facebook. Just a heads up though I do not accept friend request on Facebook. You are free to connect with me on all of the other platforms I'm on or click on the <b><a href="http://essceejulies.blogspot.com/p/contact.html">contact tab</a></b> here on the blog.</span></span><br />
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<span style="font-size: large;"><span style="background-color: #f6f6f6; color: #333333; font-family: arial, sans-serif; line-height: 17px;">Previous blog post</span></span><br />
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<span style="font-size: large;"><span style="background-color: #f6f6f6; color: #333333; font-family: arial, sans-serif;"><span style="line-height: 17px;">Clinical Trials - Ocata Therapeutics : </span></span><a href="http://goo.gl/fb/Vf5ln3"><span class="invisible" style="line-height: 0;">http://</span><span class="js-display-url">goo.gl/fb/Vf5ln3</span></a></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-88139941122780596982014-11-10T07:30:00.000-05:002014-11-15T21:01:32.093-05:00Clinical Trials: Ocata Therapeutics (ACT) - Stem Cell Therapy<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">Most rare diseases such as </span><span style="font-family: Verdana, sans-serif; font-size: x-large;"><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's</a></span><span style="font-family: Verdana, sans-serif; font-size: x-large;"> </span><span style="font-family: Verdana, sans-serif; font-size: x-large;">presently have no treatments available. So its very exciting that there are a few clinical trials taking place investigating potential treatments. </span><br />
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">Last month (October 2014) in The Lancet, </span><span style="font-family: Verdana, sans-serif; font-size: x-large;"><a href="http://www.ocata.com/">Ocata Therapeutics</a> (Formerly Advanced Cell Technology)</span><span style="font-family: Verdana, sans-serif; font-size: x-large;"> published their preliminary phase 1 clinical data for their Stem Cell therapy trials for Stargardt's Macular Dystrophy (SMD) and Age Related Macular Degeneration (AMD).</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">I decided to post about the </span><span style="font-family: Verdana, sans-serif; font-size: x-large;">Ocata preliminary data </span><span style="font-family: Verdana, sans-serif; font-size: x-large;">first. I will discuss the other two trials (Oxford BioMedica and Alkeus Pharmaceuticals) when that information is released.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">In the video I discuss the safety findings of the stem cell therapy and the encouraging efficacy data. The links to The Lancet article and other items mentioned are below the video.</span><br />
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<span style="color: #333333;"><span style="font-family: Verdana, sans-serif; font-size: x-large; line-height: 17px;"><b>The Lancet Article</b>: <a href="http://t.co/tZ9WItoDLg">http://t.co/tZ9WItoDLg</a></span></span></div>
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<span style="color: #333333;"><span style="font-family: Verdana, sans-serif; font-size: x-large; line-height: 17px;"><b>What are stem cells? Blogpost</b>: <a href="http://goo.gl/fb/DbHMHB">http://goo.gl/fb/DbHMHB</a></span></span></div>
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<span style="color: #333333;"><span style="font-family: Verdana, sans-serif; font-size: x-large; line-height: 17px;"><b>Wall Street Journal Video:</b><a href="http://on.wsj.com/1p9Zt91"> http://on.wsj.com/1p9Zt91</a></span></span></div>
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<span style="color: #333333;"><span style="font-family: Verdana, sans-serif; font-size: x-large; line-height: 17px;"><b>Stargardt Trial</b>: <a href="https://clinicaltrials.gov/ct2/show/N...">https://clinicaltrials.gov/ct2/show/N...</a></span></span></div>
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<span style="color: #333333;"><span style="font-family: Verdana, sans-serif; font-size: x-large; line-height: 17px;"><b>Previous video</b>: <a href="http://goo.gl/fb/frp18n">http://goo.gl/fb/frp18n</a></span></span><br />
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<span style="color: #333333; font-family: Verdana, sans-serif; font-size: x-large;"><b><a href="http://essceejulies.blogspot.com/2013/06/robert-lanza-genetics-cloning-act-actc-TED-extinction-animals-biocentrism-stem-cells-science-conservation.html">TED Talk Tuesday: Dr Robert Lanza - Cloning, Stem Cells & Regenerating Life</a></b></span></div>
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<span style="color: #333333; font-size: large;"><span style="font-family: Verdana, sans-serif; line-height: 17px;">Twitter: <a href="http://www.twitter.com/essceejulies">http://www.twitter.com/essceejulies</a></span></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com1tag:blogger.com,1999:blog-1145301954593409311.post-66827675055055901492014-10-28T09:13:00.000-04:002014-11-15T21:20:35.797-05:00#TEDTalkTuesday: What are stem cells? - Craig A. Kohn <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">In my last post I talked about clinical trials, more specifically clinical trials that are currently being done in regards to <b><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's</a></b>.</span></div>
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<a href="http://essceejulies.blogspot.com/2014/09/video-clinical-trials-Stargardts-Medicine--Research-Alkeus-Pharmaceuticals-Oxford-Biomedica-Advanced-Cell-Technology.html"><span style="font-family: Verdana, sans-serif; font-size: x-large;">My previous post - <span style="text-align: center;">Video: Clinical Trials</span></span></a></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">One of the trials currently in progress involves using stem cell therapy for the treatment of Stargardt's and Age related Macular Degeneration. The company <a href="http://www.ocata.com/">Ocata Therapeutics</a><b> </b>(which is conducting the trial) recently published preliminary phase 1 data in <a href="http://essceejulies.blogspot.com/2014/09/video-clinical-trials-Stargardts-Medicine--Research-Alkeus-Pharmaceuticals-Oxford-Biomedica-Advanced-Cell-Technology.html">The Lancet</a>. The data seems very encouraging and I'll be talking more about it in <i><a href="http://essceejulies.blogspot.com/2014/09/video-clinical-trials-Stargardts-Medicine--Research-Alkeus-Pharmaceuticals-Oxford-Biomedica-Advanced-Cell-Technology.html">my next video</a></i>.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">You might be interested in:</span></div>
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<a href="http://essceejulies.blogspot.com/2013/06/robert-lanza-genetics-cloning-act-actc-TED-extinction-animals-biocentrism-stem-cells-science-conservation.html"><span style="font-family: Verdana, sans-serif; font-size: x-large;"> <span style="text-align: center;">TED Talk Tuesday: Dr Robert Lanza - Cloning, Stem Cells & Regenerating Life</span></span></a></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">Stem cell therapy holds the potential to greatly improve the lives of so many people but what are they? Before I talk about the clinical trial I thought it would be helpful to give some background about these dynamic cells. I think via the mainstream press we hear a lot about stem cells but are unaware of what they actually do. The below TEDEd video popped in my video subscriptions a few weeks ago and gives a really basic overview about stem cells. You can find the entire TEDEd lesson here:</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"> <span style="text-align: center;"><a href="http://ed.ted.com/lessons/what-are-stem-cells-craig-a-kohn#review">http://ed.ted.com/lessons/what-are-stem-cells-craig-a-kohn#review</a></span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"><span style="text-align: center;">If you want a more in depth background on stem cells check out this lecture by Professor Hazel Sive from the MIT Open Courseware program. Its about 46 minutes long. Some of the information maybe slightly outdated since it was published in 2011 but gives a really great overview: </span><span style="text-align: center;"><a href="http://youtu.be/62FdhX-zS2Y">http://youtu.be/62FdhX-zS2Y</a></span></span></div>
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-88861082992343071042014-09-30T13:32:00.000-04:002014-11-15T21:33:06.958-05:00Video: Clinical Trials<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">Before I go into more detail about clinical trials involving Stargardt's I made the below video giving an overview of clinical trials.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"> Since Stargardt's is classified as a rare disease its quite profound that there are so many promising treatments in development. The three companies that will be featured in subsequent videos are:</span></div>
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<li><span style="font-family: Verdana, sans-serif; font-size: x-large;">Alkeus Pharmaceuticals</span></li>
<li><span style="font-family: Verdana, sans-serif; font-size: x-large;">Oxford Biomedica</span></li>
<li><span style="font-family: Verdana, sans-serif; font-size: x-large;"><a href="http://essceejulies.blogspot.com/2014/11/clinical-trials-advanced-cell-technology-Stargardt-Disease-AMD-research.html">Ocata Therapeutics</a> (Formerly Advanced Cell Technology)</span></li>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">For more information on clinical trials visit: </span></div>
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-39135925351001757372014-09-23T12:31:00.000-04:002014-11-15T21:26:11.290-05:00Video: Hope for a Cure & Living Life<div dir="ltr" style="text-align: left;" trbidi="on">
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"Just because the past didn't turn out like you wanted it to,</div>
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doesn't mean your future can't be better than you ever imagined.</div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">Slowly losing my central vision to <b><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's Disease</a></b> is something you can imagine I'm not exactly thrilled about but its the reality I live in. I created this blog to document my experience and also to learn more about living with visual impairment.</span><br />
<a name='more'></a><span style="font-family: Verdana, sans-serif; font-size: x-large;"> Many sighted individuals and those of us new to vision loss are ignorant about the lives of the visually impaired. We often think about the things we will lose than about what we'll gain. This is something I struggle with. I've written about and met so many visual impaired people who despite what has happened to them have independent and fruitful lives. Yet in the back of my mind I still hope for a cure. Still hoping for a future where my vision is not such a limiting factor. With advancements in medicine maybe my future won't be that blurry.</span><br />
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A few weeks ago I came across a blog post by fellow Stargardt's blogger Chrissy Renee entitled <i>Hope</i>. In it she discussed how sometimes the over-fixation of hoping for a cure can distract us from the things we can still accomplish. </span><br />
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In the below video I discuss how I feel about balancing hoping for a cure and living one's life. I also wanted to make this video before I started talking about viable treatments being developed for Stargardt's. </span><br />
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"><b>Chrissy Renee's Blog</b>: <a href="http://goo.gl/QNTMSF">http://goo.gl/QNTMSF</a></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"><b>Ron McCollum's TED Talk:</b> <a href="http://goo.gl/qrI9Z6">http://goo.gl/qrI9Z6</a></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"><b>Previous video:</b> <a href="http://goo.gl/zLnxae">http://goo.gl/zLnxae</a></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"><b>Others with Stargardt's Playlist</b> - <a href="http://goo.gl/4TxtMH">http://goo.gl/4TxtMH</a></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"><b>Featured TED Talks on My Blog </b>- <a href="http://goo.gl/qVvZv4">http://goo.gl/qVvZv4</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Connect With Me -</b></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Youtube: </b><a href="http://www.youtube.com/TheEssceejulies">http://www.youtube.com/TheEssceejulies</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Twitter:</b> <a href="http://www.twitter.com/essceejulies">http://www.twitter.com/essceejulies</a></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-89333735767561359422014-08-26T12:35:00.001-04:002014-11-15T21:24:30.984-05:00Video: My Last 2 Videos<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">2014 so far is a low productivity year for this blog. I've been venturing out on other territories on this grand social media sphere but rarely do I touch down on home base (this blog). I've started other projects some are winding down so I'll have a bit more time. </span></div>
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<a name='more'></a><span style="font-family: Verdana, sans-serif; font-size: x-large;">The two videos below are my latest uploads to my youtube channel <b>Essceejulies</b>. The channel is a companion to this blog so you can check it out here at this link: <a href="http://www.youtube.com/TheEssceejulies">www.youtube.com/TheEssceejulies</a> If I'm not posting here I'm most likely posting there. (Thursdays)</span><br />
<span style="font-family: Verdana, sans-serif; font-size: x-large;"><br />The first video directly below is an update. This summer has been very busy and I just catch everyone up to what's been going on.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">The second video I talk about officially becoming a pedestrian. Back a few weeks ago it had been the first time in seven years I had been to the DMV (department of motor vehicles). The last time I was there my vision was better and I was taking a photo for my driver's license. Now I was going there to get proper identification. It was bittersweet but that's the reality I presently live in.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">Connect with me:</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">Twitter: <a href="http://www.twitter.com/essceejulies">www.twitter.com/essceejulies</a></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">Youtube: <a href="http://www.youtube.com/TheEssceejulies">www.youtube.com/TheEssceejulies</a></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;"><span style="-webkit-text-stroke-width: 0px; color: black; font-family: Trebuchet MS, sans-serif; font-size: medium; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-transform: none; white-space: normal; word-spacing: 0px;">Google+: </span><span style="text-align: center;"><a href="https://www.google.com/+SharinaJulien">https://www.google.com/+SharinaJulien</a></span></span></div>
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-86422734899195942572014-07-25T10:40:00.001-04:002014-07-25T10:45:14.299-04:00Video: The Prospect of Bring a Mom <div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: left;"><span style="font-size: small;">I snapped a photo of my niece holding on to my fingers with her adorable little hand.</span></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Its Friday so that means a new video post. Every Thursday a new video on my Essceejulies channel is published. Last week that wasn't the case because of several factors One of the reasons was two Mondays ago (July 14) I became a first-time aunt.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">The birth of my niece inspired this week's video. When big life event's happen you often think about the context of your life. Having a form of progressive vision loss (<b><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's)</a></b> I often think about what my life will be like in the ambiguous future.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Turning Your Can'ts into Cans: Being a Visually Impaired Parent</b>: <a href="http://goo.gl/36MrXd">http://goo.gl/36MrXd</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Previous video:</b> <a href="http://goo.gl/ycqlEM">http://goo.gl/ycqlEM</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Others with stargardt's Playlist -</b> <a href="http://goo.gl/4TxtMH">http://goo.gl/4TxtMH</a></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Featured TED Talks on My Blog -</b> <a href="http://goo.gl/qVvZv4">http://goo.gl/qVvZv4</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Connect With Me -</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>My Channel: </b><a href="http://www.youtube.com/TheEssceejulies">http://www.youtube.com/TheEssceejulies</a></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>My Blog</b>: <a href="http://www.essceejulies.blogspot.com/">http://www.essceejulies.blogspot.com</a></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Twitter:</b> <a href="http://www.twitter.com/essceejulies">http://www.twitter.com/essceejulies</a></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-48374486689655655312014-07-11T10:22:00.000-04:002014-07-18T12:21:03.466-04:00Video - Being Aware of Other Senses | Essceejulies <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Thanks to advances in technology over recent decades and the growth of social media we are sharing more information than ever. Most of this information is visually based. This often creates circumstances where we're increasingly not in "touch" with our other senses.</span><br />
<a name='more'></a><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">In my latest video I talk about being aware of all our senses. One of the first things I thought about when I was initially told I was losing my vision was being more reliant on my other senses. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Also in this video I give a shoutout to another visually impaired Youtuber JD Dalton (his info is below). He has <a href="http://www.albinism.org/publications/what_is_albinism.html">A<b>lbinism</b></a> which is a congenial disease that causes a lack of pigmentation in the hair, skin and eyes. This causes those born with Albinism to be born with low vision or legally blind but unlike <b><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's</a></b> their vision stays stable. JD makes great videos on a variety of topics such as disability, LGBT issues, his creative interests and so much more.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>JD Dalton's channel:</b> <a href="http://www.youtube.com/PaatunghoyaJD">http://www.youtube.com/PaatunghoyaJD</a></span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Previous video:</b> <a href="http://youtu.be/ZihwXEI4-p4">http://youtu.be/ZihwXEI4-p4</a></span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Others with stargardt's Playlist</b> - <a href="http://goo.gl/4TxtMH">http://goo.gl/4TxtMH</a></span></span><br />
<span style="font-size: x-large;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><b>Featured TED Talks on My Blog </b>- <a href="http://goo.gl/qVvZv4">http://goo.gl/qVvZv4</a></span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b><u>Connect With Me -</u></b></span></span><br />
<span style="font-family: 'Trebuchet MS', sans-serif; font-size: x-large;">Twitter: <a href="http://www.twitter.com/essceejulies">http://www.twitter.com/essceejulies</a></span></div>
Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-76307417979687734822014-07-08T15:11:00.001-04:002014-07-18T12:23:20.917-04:00Video - Reasons To Smile | Essceejulies <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">In last week's video I talked about why I had reasons to smile over the past few weeks. This includes family milestones, visiting my eye doctor and finally meeting with my state's commission for the blind to help me to have</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><span style="background-color: white; color: #333333; line-height: 17px;">Previous video: </span><a class="yt-uix-redirect-link" dir="ltr" href="http://youtu.be/9wBKWyvhcbc" rel="nofollow" style="background: rgb(255, 255, 255); border: 0px; color: #999999; cursor: pointer; line-height: 17px; margin: 0px; padding: 0px; text-decoration: none;" target="_blank" title="http://youtu.be/9wBKWyvhcbc">http://youtu.be/9wBKWyvhcbc</a><br style="background-color: white; color: #333333; line-height: 17px;" /><br style="background-color: white; color: #333333; line-height: 17px;" /><span style="background-color: white; color: #333333; line-height: 17px;">Others with stargardt's Playlist - </span><a class="yt-uix-redirect-link" dir="ltr" href="http://goo.gl/4TxtMH" rel="nofollow" style="background: rgb(255, 255, 255); border: 0px; color: #999999; cursor: pointer; line-height: 17px; margin: 0px; padding: 0px; text-decoration: none;" target="_blank" title="http://goo.gl/4TxtMH">http://goo.gl/4TxtMH</a><br style="background-color: white; color: #333333; line-height: 17px;" /><br style="background-color: white; color: #333333; line-height: 17px;" /><span style="background-color: white; color: #333333; line-height: 17px;">Featured TED Talks on My Blog - </span><a class="yt-uix-redirect-link" dir="ltr" href="http://goo.gl/qVvZv4" rel="nofollow" style="background: rgb(255, 255, 255); border: 0px; color: #999999; cursor: pointer; line-height: 17px; margin: 0px; padding: 0px; text-decoration: none;" target="_blank" title="http://goo.gl/qVvZv4">http://goo.gl/qVvZv4</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Connect With Me -</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>My Blog:</b> <a href="http://www.essceejulies.blogspot.com/">http://www.essceejulies.blogspot.com</a></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Twitter:</b> <a href="http://www.twitter.com/essceejulies">http://www.twitter.com/essceejulies</a></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-60882697120475506962014-06-27T10:44:00.001-04:002014-07-18T12:24:00.565-04:00No video this week & other things.<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">I didn't post a video this week on my <b><a href="http://www.youtube.com/TheEssceejulies">youtube channel</a></b>. Its been a busy week with birthdays, graduations and meetings and I didn't feel it necessary to make a 30 second video just to say that. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">One of the meetings I had this week was one it seems like I've been waiting a year to have. If you follow me on twitter (<b><a href="http://www.twitter.com/essceejulies">@Essceejulies</a></b>) I posted the below vague tweet:</span></span></div>
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<span style="font-size: x-large;">Things are starting to move forward. :)</span></div>
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<span style="font-size: x-large;">— Sharina Julien (@eSsCeeJulies) <a href="https://twitter.com/eSsCeeJulies/statuses/482155897926320128">June 26, 2014</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Things are moving forward to helping me become more independent. I'll talk more about it in the following week's and months but I'm really excited!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Oh and also I wanted to remind you that if you're really into Google+ I created two <b><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's </a></b>groups over there. One is a <b>public awareness group</b> and the other is a <b>private support group</b>. I encourage you to join either group as a moderator or contributor.</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Awareness Group: </span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Support Group:</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><a href="https://plus.google.com/communities/100039691993030726093">https://plus.google.com/communities/100039691993030726093</a></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-88704892814335339462014-06-20T13:00:00.001-04:002014-07-18T12:24:55.129-04:00My Latest Video: Reconciling Identity<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">I finally solved my audio issues with my videos.... but now it takes longer to edit them. This week's video was some what "inspired" by my latest <a href="http://www.essceejulies.blogspot.com/2014/06/tedtalktuesday-inspiration-porn-and.html#more"><b>TED Talk Tuesday pos</b>t</a> about <i>Inspiration Porn</i>.</span><br />
<a name='more'></a><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">That TED Talk made me think about how I perceived myself before I was diagnosed with<a href="http://www.essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html"> <b>Stargardt's</b></a>. There are certain privileges that you take for granted when You are abled-bodied but what do you do when you become limited?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Check out my video down below and answer this week's question in the comments below. Also subscribe to my channel so you don't miss out here:</span></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><a href="http://www.youtube.com/TheEssceejulies">www.youtube.com/TheEssceejulies</a></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-5348611074357448902014-06-17T15:33:00.004-04:002014-09-04T06:53:37.006-04:00#TEDTalkTuesday: Inspiration Porn and the Objectification of Disability: Stella Young<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Its a Tuesday so it must be time for another TED Talk. Now, don't be alarmed (or excited) by the word 'porn" in the title of this post. This post is definitely not about sex.</span><br />
<a name='more'></a><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Today's featured TED Talk has been circulating throughout the disability community for the past couple of weeks. In this TED Talk Stella Young discusses how the objectification of individuals with disabilities as inspirational devices is dehumanizing. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I first heard the phrase <i>inspirational porn</i> when I started to connect with more people within the disability community.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: Trebuchet MS, sans-serif;"><i>Inspiration Porn</i> or <i>Disability Porn</i> is when disabled people are deemed exceptional for just existing. Yes, just existing, not for anything that is profoundly exceptional. Abled-bodied people using phrases such as "moving", "amazing" and "brave" to describe disabled people for doing mundane things such as taking walks or just simply being alive. </span><span style="font-family: 'Trebuchet MS', sans-serif;"> </span></span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">By calling people exceptional for doing simple things is like saying you don't expect anything more from them. Further excluding them from society. </span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Now the above criticism might sound a little harsh but I do have compassion for abled-bodied folks. When I started this blog it was a way for me to understand my new circumstance of being legally blind but I have to admit that I was still coming from the perspective of being an abled-bodied person. Still not yet self-identifying as disabled just dealing with this new identification. </span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I feel like in one of my early posts I committed an act of disability porn by featuring a blind toddler using her white cane to get around. Maybe I'm being a little harsh on myself... I wasn't trying to be objectifying. It was a way for me to deal with my potential future dealing with progressive vision loss. I saw this child who was being given independence which helped me to see a feasible future for myself.</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">That's why the term inspiration porn was initially confusing for me. Is it still inspiration porn if the person doing the objectifying is also disabled? I'm not trying to downplay the problematic nature of disability porn just wanted some feedback on this.</span></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-83828123969504637252014-06-16T11:05:00.002-04:002014-07-18T12:33:11.818-04:00Rolling out My New Channel<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">The roll out of my new youtube channel <i><b><a href="http://www.youtube.com/TheEssceejulies">Essceejulies</a></b></i> has been a little rough. A couple of my videos were having audio problems so I had to delete them and then repost them. I can tell you it is as frustrating as it sounds. I also have to admit that I am not the best self-promoter so things have been a bit slow. But</span><br />
<a name='more'></a><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">I feel like everything is now coming together. I've posted 5 videos including a trailer. </span><br />
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If you are a regular reader of my blog you'll notice that 2014 so far hasn't been my most productive year. A confluence of factors are the cause of the low productivity but the main one is youtube. Like I've stated in previous blog posts I've really started to like creating videos and saw that more and more people were using videos to tell their stories. There was a little hesitation on my part to openly talk about my visual impairment because I didn't want people to stereotype me as only that. I want to be known as someone who has a visual impairment not just as my visual impairment.</span><br />
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Most people think that Youtube is a place filled with cat videos but its also a tremendous social network. Where people not only present ideas or make entertaining video content but also build communities of like-minds. There are communities based on food, video games, fashion/beauty, lifestyles and the list goes on. So I thought the disability community has to be out there too. Actually more specifically those whose disability is caused by <b>Stargardt's</b>. Its been a little difficult finding others but I have. Most of them are not vloggers per se but have made videos talking about their experiences. </span><br />
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<span style="color: blue;"><b><a href="http://www.youtube.com/watch?v=QRFhfyeoUmo&list=PLlvAOpdEfRvMPCj3lTanYJGXLAPpRpl-W&feature=share">Here is a link to a playlist featuring them.</a></b></span></span><br />
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So I decided that I wanted to make a new channel where I talk about my experiences with Stargardt's and connect to other within the disability community.</span><br />
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The videos are posted on Thursdays and will be posted on this blog on Fridays. Here's the link to my channel so you don't miss out: </span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><b><a href="http://www.youtube.com/TheEssceejulies">www.youtube.com/TheEssceejulies</a></b></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b> </b>Here are my latest four videos to catch you up to speed.</span></span><br />
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What I See: An Introduction</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">This is the introduction where I talk about my experience.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">In this video I clarify some things and introduce you to two channels by others with Stargardt's; <b><i><a href="http://youtu.be/QRFhfyeoUmo">Stargardt Mommy</a></i></b> and <b><i><a href="http://youtu.be/6kinKTPTSGg">The Blind Spot.</a></i></b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In the below video I talk about living within my visual acuity. Since I'm in the somewhat early stages of Stargardt's my vision isn't so bad that I can't see at all but I do have some limitations. Living within these limitations is what I have to deal with.</span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">This below video features a playlist of videos I initially made on my other channel (Essceejulies Vlogs) talking about my vision. Some of the videos in the playlist have been featured on this blog.</span></div>
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-53605034127832041042014-05-27T12:44:00.004-04:002014-05-30T08:12:33.386-04:00New Youtube Channel | Essceejulies<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Oh wow a blog post that isn't a TED Talk. Could this mean this blog will start being a blog again? One way I'm attempting to get back into the groove is by incorporating my interest in making videos.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">On my personal youtube channel I tip-toed around talking about my disability. I made that account back in 2007 before I was diagnosed so its original intent was different. I made a few videos that I've posted on this blog but never really went in-depth. I felt it would be better to make a separate channel that would be a companion to this blog which would be a forum for people to talk about disability and connect.</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><br />In the video (below) I give a brief overview of being legally blind, <b><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's</a></b> and all the emotions surrounding my vision loss. You can subscribe here: <a href="http://www.youtube.com/subscription_center?add_user=TheEssceejulies">www.youtube.com/TheEssceejulies</a>. Videos will be posted on Thursdays. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">UPDATE: There were some complaints about the audio in the previous video so I uploaded an edited version of that video.)</span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-5253797022794639042014-05-13T13:37:00.001-04:002014-05-13T13:37:54.506-04:00#TEDTalkTuesday Neil Harbisson: I Listen To Color <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Today's TED talk features how the stuff of science fiction is slowly becoming reality.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Technology over the past couple of decades has advanced so much that technologies that used to seem centuries away are quickly becoming within reach.</span><br />
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<b style="font-family: 'Trebuchet MS', sans-serif; font-size: x-large;"><a href="http://en.wikipedia.org/wiki/Neil_Harbisson">Neil Harbisson</a></b><span style="font-family: 'Trebuchet MS', sans-serif; font-size: large;"> is a composer, musician, an activist and a cyborg. Yes, part man and machine. Neil has a condition called <b><a href="http://en.wikipedia.org/wiki/Achromatopsia">Achromatopsia</a></b> where he doesn't see color instead everything he views is in grayscale. When he was 21 he collaborated with a computer scientist to develop technology for him to experience color.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif; font-size: large;">The technology they developed allows Neil to listen to color. Different tones are assigned to various colors to experience color as a symphony of sounds. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif; font-size: large;">Neil considers himself a cyborg because the antenna that allows him to hear color is connected to his brain. This is so much a part of his life that his passport photo shows him wearing his sensor. He even started the <b><a href="http://www.cyborgfoundation.com/">Cyborg Foundation</a> </b>which helps people become cyborgs.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif; font-size: large;">It isn't that far-fetched to think that more people may be interested in having technology fused with their bodies. <b><a href="http://bionicvision.org.au/">Bionic Eye</a></b> which is an Australian company is developing a bionic eye for the visually impaired. This device is specifically targeted at helping those with R</span><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">etinitis Pigmentosa and Age-Related Macular Degeneration. The device is implanted into the retina of the eye where visual information is transmitted via the optic nerve allowing individuals to better navigate their surroundings.</span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-59840217061600059182014-04-15T15:28:00.000-04:002014-05-13T20:58:39.906-04:00#TEDTalkTuesday - Sam Bems' Philosophy for a Happy Life<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Its been a few Tuesdays since a TED Talk post and today’s featured presentation is a great one to start with. I know that we’re almost a third of the way through 2014 but is it too late to say “Happy New Year!”?</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">The first time I heard about Sam Berns was actually in a previous TED Talk featuring <b><a href="http://essceejulies.blogspot.com/2013/04/TED-Talks-Francis-Collins-Healthcare-Science-We-need-better-drugs-genetics-rare-diseases.html">NIH Director Dr. Francis Collins</a></b>. Dr. Collins interviewed Sam about living with the extremely rare rapid aging disease <b><a href="http://www.progeriaresearch.org/about_progeria/">Progeria</a></b>. Back in October (2013) Sam was able to be a presenter at the TEDx Mid-Atlantic conference. In that talk Sam discussed his personal philosophy on happiness. Unfortunately earlier this year in <b><a href="http://www.progeriaresearch.org/sam-berns-102396-011014.html">January Sam passed away</a></b> at the age of 17 due to complications of Progeria. In his brief 17 years of life Sam came up with a simple yet inspirational philosophy on how to find contentment. </span></div>
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-51371419803637649862014-04-02T19:43:00.000-04:002014-04-02T20:15:41.449-04:00Two-Year Stargardt's Anniversary and I'm Back<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Well hello, its been a while since I blogged. I took a break but I'm back. Today happens to be a special day for me, its been two years since <b><a href="http://essceejulies.blogspot.com/2012/07/my-new-perspective.html">I was diagnosed with Stargardt's</a></b>. It really doesn't feel like its been two years. In the video below I talk a little more about it.</span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-38561466267396601492014-01-01T04:37:00.003-05:002014-02-08T19:09:12.999-05:00My Vision<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I just wanted to end 2013 talking about a topic that should of been one of my first vlog post and that's my visual impairment. If you are a regular reader of my blog this isn't news but I haven't discussed it much on my youtube channel. I've learned a lot over the past 20 months since being diagnosed with <b><a href="http://www.essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's Disease</a></b>.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Others With Stargardt's Playlist</b>:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><a href="http://www.youtube.com/playlist?list=PL9t3Sm6-GgyXz5tGwybn6bEAEH2ir3WQx">http://www.youtube.com/playlist?list=PL9t3Sm6-GgyXz5tGwybn6bEAEH2ir3WQx</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>What I See Playlist</b>:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><a href="http://www.youtube.com/playlist?list=PL9t3Sm6-GgyWA7feo9l82Vby_o-DkNhkn">http://www.youtube.com/playlist?list=PL9t3Sm6-GgyWA7feo9l82Vby_o-DkNhkn</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><b>Watch Previous Video here</b>: <a href="http://youtu.be/jWdL_sXg3fs">http://youtu.be/jWdL_sXg3fs</a></span></div>
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-62396255940410707472013-12-03T14:49:00.002-05:002013-12-03T21:51:21.615-05:00#TEDTalkTuesday Chris Downey: Design with the blind in mind<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Haven't done a <b><a href="http://essceejulies.blogspot.com/2013/10/tedtalktuesday-roundup-video-playlist.html">TED Talk Tuesday</a> </b>in a while but I'm back with a good one. Today (December 3rd) is International Day of Persons with Disabilities. This year's theme is <a href="http://www.un.org/disabilities/default.asp?id=1607#background">"</a><b><a href="http://www.un.org/disabilities/default.asp?id=1607#background">Break Barriers, Open Doors</a>: </b>for an inclusive society and development for all”. I found this great talk that I feel embodies this year's theme perfectly.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Chris Downey is an architect who back in 2008 underwent brain surgery to remove a tumor. Even though the surgery was successful it caused him to become blind. After going through rehabilitation to reorientate himself to his new circumstances he started to compare and contrast life before and after vision loss. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Being an architect Mr. Downey was very concerned with how things looked but after his vision loss he had to use his other senses in his design approach. He didn't let vision loss stop him but as a guide to inspire him for more inclusive design. Mr. Downey's TED talk focuses on inclusive design when it comes to city-planning.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">The following is a quote from Chris Downey:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">"So my final takeaway for you is that not only is the city good for the blind, but the city needs us. And I'm so sure of that that I want to propose to you today that the blind be taken as the prototypical city dwellers when imagining new and wonderful cities, and not the people that are thought about after the mold has already been cast. It's too late then. So if you design a city with the blind in mind, you'll have a rich, walkable network of sidewalks with a dense array of options and choices all available at the street level. If you design a city with the blind in mind, sidewalks will be predictable and will be generous. The space between buildings will be well-balanced between people and cars."</span></blockquote>
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-29656777287591365992013-11-26T09:02:00.000-05:002013-11-26T09:05:02.125-05:00Just In Time For the Holidays: Braille Greeting Cards<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgesMGsW9ePq1NL3w-hZ6kF-ZYERfK_iMkAtmrCKWwz5co1WLug59WaEqTAvz1wmOz8q3UqswTjibHMIdAhq6hy9BzEUT0hfamNPT3dq6Kj9Hor7FcQA_xKq876Plzazl0KMULeyGgOAy4/s1600/BZSLwPrCEAAQbMU.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgesMGsW9ePq1NL3w-hZ6kF-ZYERfK_iMkAtmrCKWwz5co1WLug59WaEqTAvz1wmOz8q3UqswTjibHMIdAhq6hy9BzEUT0hfamNPT3dq6Kj9Hor7FcQA_xKq876Plzazl0KMULeyGgOAy4/s640/BZSLwPrCEAAQbMU.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The above picture is an assortment of Braille Tactile Holiday Greeting cards.</td></tr>
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">So the other day one of my <b><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's</a></b> twitter friends Yvonne Felix tweeted me the above picture of greeting cards. These are not just any greeting cards they are Braille tactile cards. Yvonne was tired of getting cards that she couldn't see so since she's an artist she decided to make her own. This is such a great idea. The proceeds from the cards will go to support the non-profit <b><a href="http://www.resightarts.com/">Resight Inclusive Arts</a></b>.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">The cards are $3.00 or $25.00 for 40 cards you can purchase the cards <b><a href="http://www.yvonnefelixartwork.com/apps/webstore/products/show/4282468">here</a></b>.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">If you liked this post you maybe interested in reading: </span><br />
<span style="font-family: Verdana, sans-serif; font-size: x-large;"><a href="http://essceejulies.blogspot.com/2013/03/Yvonne-Felix-Artist-living-with-Stargardts-art-arts-canada.html">Artist Yvonne Felix Thriving With Stargardt's</a></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-62254431470567259392013-11-24T09:02:00.000-05:002015-03-25T04:55:09.096-04:00Saying Hi and Stargardts Links <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">I'm saying hello via the below video I made but I just realized that some countries don't allow video playback. Basically what I'm saying is I know that on this blog I can be inconsistent when I post and I've drifted away from telling my story dealing with vision loss. Below the video I provided links to websites, blogs, a video playlist and more to help you connect with others who have Stargardt's. If you know of some information I missed feel free to contact me. If you are able to watch my video I made it closed captioned so you can understand me better.</span></div>
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<b><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><u>Websites</u></span></b><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Stargardt.Net is a tremendous resource for those with the condition. - <a href="http://www.stargardts.net/">http://www.stargardts.net/</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Stargardt Press - Is a mostly Spanish language site updating information on Stargardt's and other eye diseases. - <a href="http://medicablogs.diariomedico.com/stargardtpress/">http://medicablogs.diariomedico.com/stargardtpress/</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><b>Social Networks</b></span></u><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><b>Twitter</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Use or search for the hashtags #stargardts #stargardt or #StargardtDiease to connect with others on the site.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><b>Facebook</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Groups</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Do a search on these groups. I would suggest to first request to join the 'Closed' groups since they are private and won't show up on your Facebook profile page.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Stargardt Disease - Macular Degeneration Support Group (Closed/Private)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Stargardt's Awareness Group (Open/Public)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Stargardt's Disease Forum (Closed/Private)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">The Art of Going Blind w/ Stargardt's - support group (Closed/Private)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><b>Google+ (Plus) Communities</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Stargardt's Disease Awareness: This is a public group anyone is welcome to join.</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">- <a href="https://plus.google.com/communities/106991972989952787499">https://plus.google.com/communities/106991972989952787499</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Stargardt Disease Support - This a private group for those who have the disease to connect with others -</span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><a href="https://plus.google.com/communities/100039691993030726093">https://plus.google.com/communities/100039691993030726093</a></span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><u>Stargardt Bloggers</u></span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">My Blind Side is written by Tanna who writes about life with Stargardt's - <a href="http://myblindsideblog.blogspot.com/">http://myblindsideblog.blogspot.com/</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">See Through My Eyes is written by Chrissy Renee who is an Australian blogger living with the condition - <a href="http://www.stargardtsdisease.blogspot.com/">http://www.stargardtsdisease.blogspot.com/</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Living With Stargardt's Disease - Is written by Bhumika who lives in India - <a href="http://stargardtsdiseasesupport.blogspot.com/">http://stargardtsdiseasesupport.blogspot.com/</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Living With & Supporting Stargardt's Disease - Is written by Kayley Rose who doesn't let Stargardt's slow her down in the UK - <a href="http://stargardt.wordpress.com/">http://stargardt.wordpress.com/</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Living with Stargardt's - Is written by Jen who has had Stargardt's for 20 years - <a href="http://living-with-stargardts.blogspot.com/">http://living-with-stargardts.blogspot.com/</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Vivencias de Ana Mirada Stargardt - This is a Spanish language based blog written by Liz who lives in Mexico - <a href="http://miradastaragatdy.blogspot.mx/">http://miradastaragatdy.blogspot.mx/</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Are You Looking At Me? - Living With A Visual Impairment - Is written by Heather who writes about being a mom with Stargardts - <a href="http://hgarbitt.blogspot.com/">http://hgarbitt.blogspot.com/</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">The Checkered Eye Project: Blog - Is written by Libby who is working on making the lives of the visually impaired better - <a href="http://www.checkeredeye.com/blog/">http://www.checkeredeye.com/blog/</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Diamond Panes - Is written by South African writer Leanne who writes so eloquently about life - <a href="http://www.diamondpanes.blogspot.com/">http://www.diamondpanes.blogspot.com/</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Creative Insight - Is the blog of visually impaired Artist Michael Williams - <a href="http://crativeinsight.blogspot.com/">http://crativeinsight.blogspot.com/</a></span><br />
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Helping Lexi - Is a blog by Madi who is a mom with Stargardt's. Her blog is about her son's journey dealing with many different issues. - <a href="http://helpinglexi.blogspot.com/">http://helpinglexi.blogspot.com/</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Maono Ya Chini - Is a blog written by Fatmatta who is a college student who has Stargardt's. One of her goals is to one day develop technologies that will help the visually impaired. - <a href="http://maonoyachini.com/">http://maonoyachini.com/</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Maurie Hill is an employee of Al Squared which is a company that makes computer software for the visually impaired. Maurie has Stargardt's and is a contributor to the company's Zoomed In blog. - <a href="http://www.aisquared.com/blog/tag/maurie-hill/">http://www.aisquared.com/blog/tag/maurie-hill/</a></span><span style="font-family: 'Trebuchet MS', sans-serif; font-size: x-large;"><br /></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">Blind Girls See - This blog is written by Nysha Charlene who recently started a blog chronically her journey with Stargardt's. Saying " we can all continue marching onward, seeking with our souls and seeing with our hearts." - <a href="http://www.blindgirlssee.com/">http://www.blindgirlssee.com/</a></span><br />
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<span style="font-size: x-large;"><span style="font-family: Trebuchet MS, sans-serif;"><b><a href="http://www.thedimlypages.com/Stargardts.aspx">Through The Glass, Dimly</a></b> - </span><span style="font-family: Trebuchet MS, sans-serif;">Information about Stargardt's Disease from a guy living with it. Who has been chronicaling his stargardt's journey since 2010.</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><b><u>Video Playlist: Others With Stargardt's Disease</u></b></span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">I made a video playlist of people talking about living with Stargardt's Disease. The playlist can be found at the following link: </span><br />
<span style="color: #0000ee; font-family: Trebuchet MS, sans-serif; font-size: x-large;"><u>https://www.youtube.com/playlist?list=PLlvAOpdEfRvMPCj3lTanYJGXLAPpRpl-W</u></span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com2tag:blogger.com,1999:blog-1145301954593409311.post-59824657796665556362013-10-29T16:48:00.001-04:002014-09-02T22:29:48.490-04:00#TEDTalkTuesday - Vampires: Folklore, fantasy and fact - Michael Molina <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">I'm switching it up a bit with my TED Talk Tuesday post and featuring a video from the education branch of the TED organization. This year I've been more enthusiastic about celebrating Halloween since last year being unable to due so because of <b><a href="http://essceejulies.blogspot.com/2012/11/a-bump-in-road.html">Hurricane Sandy</a></b>.</span><br />
<a name='more'></a><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;"> I wanted to share this interesting video with you about vampires and folklore. I'm a bit of a history and anthropology geek so videos like the below are quite fascinating. The clip is an entertaining animated look at how the folklore of vampires is more than just Dracula but is a global phenomenon. Its cool how people all around the world who didn't have any interactions with one another all came to a similar conclusion.</span><br />
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Earlier this month on my <b><a href="http://www.youtube.com/TheEssceejulies">Youtube channel</a></b> I attempted to make a video about mythology and folklore but I feel the below video did a better job presenting that idea. I'll save you a few minutes by not posting that video here.</span><br />
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Its interesting the topic is about vampires because I can point out a few similarities between vampires and someone who has <b><a href="http://essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's</a></b>. You're probably like what? I'll explain:</span><br />
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<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">Vampires often have to shield themselves from the light. People who have Stargardt's shield ourselves from bright lights because of photophobia or light sensitivity.</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">Vampires are often portrayed as having red eyes. Some Stargardt's/Low Vision patients might benefit from wearing red contact lenses. (<a href="http://www.achromatopsia.info/red-contact-lenses/">Achromatopsia Info</a>) </span></li>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">I'm not exactly sure how I feel about wearing red contact lenses all year long. It would be different but I definitely would have to investigate further.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">This video has given me the idea that I should possibly be a vampire this halloween, I'm still undecided. I got the photophobia down-packed. Just need some fangs and makeup and I'm good to go. *smiles*</span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-59821442829067013672013-10-15T10:20:00.002-04:002013-11-06T04:13:56.086-05:00TEDTalkTuesday - Julian Baggini: Being Multifokal<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">Finally back with a new TED Talk. The title of this blog is <i>The Ever Changing Perspective of Essceejulies</i>. The word in that title that jumps out should be <b>perspective</b>. The use of the word perspective isn't just used to describe the physical sense of sight but how perspective shapes how we see with our inner-vision. Perspective molds so much of how we navigate through life. It shapes who we think we are and how we interact with others.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">The below video is a talk from the TEDxKingsCollegeLondon conference featuring writer, journalist and philosopher Julian Baggini. Mr. Baggini has written several books about perception and personal identity. In his TED Talk he discusses the importance of "seeing" the world and one's self through a multifocal lens. Too often when we narrowly perceive ourselves or others in a singular way we greatly limit our experiences. </span><br />
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When I was told I was losing my vision it really made me question my personal identity. It changed my perspective on who I thought I was and what I could do. I had and still have to a certain extent a fear that I'm just going to be known as someone with a visual impairment. I can not define myself in that narrow narrative. </span><br />
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<span style="font-size: x-large;"><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">"When we come to see ourselves in terms of just one thing. For example, I'm a writer or I'm a mother or whatever it might be. You're very vulnerable. If something happens in your life which challenges that identity and your left without the sense of identity. Its very important to recognize the plurality of who you really are... for resilience</span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">" - Julian Baggini: from the <a href="http://youtu.be/MA73ZdbKKzc?t=16m43s">TED Talk Being Multifokal</a>"</span></span></blockquote>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">Over the past year I have gotten the opportunity to know many amazing people who also happen to have disabilities. They haven't allowed society's myopic views or themselves limit what they can do. That's why this blog is called The Ever Changing Perspective of Essceejulies because we should never allow ourselves to be narrowly defined.</span><br />
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-35823282049329399482013-10-01T15:03:00.001-04:002013-11-06T04:14:26.429-05:00#TEDTalkTuesday Roundup Video Playlist <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">Its Tuesday so its time for a TED Talk but I'm not featuring one talk but instead a playlist. The TED talk posts have been the life-preservers for this blog. I've criticized myself in the past for letting the posts become the only content I would feature for a while on the blog but they aren't a complete waste.</span><br />
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The talks that I've featured so far are all fascinating and have provided me with great insight into are world. The below playlist features the eight talks I've blogged about. The talks on average are 10 to 20 minutes long so I truncated the videos down to under five minutes each. This will allow you to get a general idea of what was being discussed in each presentation. I also encourage you to watch the full videos if you can.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">The following are links to each of my TED Talk Tuesday posts:</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Francis Collins - </span><span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://goo.gl/NcCtHJ">http://goo.gl/NcCtHJ</a></span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Susan Cain - </span><span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://goo.gl/YBptgi">http://goo.gl/YBptgi</a></span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Oliver Sacks - </span><span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://goo.gl/906FXs">http://goo.gl/906FXs</a></span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Lissa Rankin - </span><span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://goo.gl/lbZNQV">http://goo.gl/lbZNQV</a></span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Ron McCallum - </span><span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://goo.gl/Mu7ztu">http://goo.gl/Mu7ztu</a></span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Robert Lanza - </span><span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://goo.gl/T221CR">http://goo.gl/T221CR</a></span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Chen Lizra - </span><span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://goo.gl/RZ3Egt">http://goo.gl/RZ3Egt</a></span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Brene Brown - </span><span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://goo.gl/zjqXSG">http://goo.gl/zjqXSG</a></span></span></div>
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Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0tag:blogger.com,1999:blog-1145301954593409311.post-67724800634839096522013-09-25T15:39:00.001-04:002013-11-06T04:15:08.071-05:00My VEDA Experience #SSSVEDA <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">Last month I participated in VEDA or Vlog Everyday In August. A vlog is a portmanteau of the words "video" and "blog". I flirted with the idea of vlogging or making videos on Youtube since 2007 (before I was diagnosed with Stargardt's). I've always enjoyed the creative content the site has to offer. Yes, its more than cat videos! Its also been amazing to see so many of the creators develop their brands and others sharing their lives over the years.</span><br />
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<span style="font-size: x-large;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Last year when I was diagnosed with <b><a href="http://www.essceejulies.blogspot.com/2012/07/so-what-is-stargardts-disease.html">Stargardt's</a></b> I didn't really know what my vision would be like a year from that date. </span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Would my vision be stable or worse?</span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"> It was like being in a visual limbo, feeling stuck. I can not sit back anymore and wonder what will happen, I have to live within my capabilities. If my vision allows me to film and edit videos then I'm not going to hold myself back.</span></span><br />
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I participated in the Savvy Sexy Social VEDA or the #SSSVEDA which was hosted by social media marketing consultant <b><a href="https://twitter.com/Schmittastic">Amy Schmittauer</a></b>. We had a topics calendar that helped guide us in making content for our videos. In an effort to keep up with the calendar I really didn't get to properly explain what life has been life dealing with vision loss. If you were to watch my videos you really can't tell that I have a visual impairment. That is partially why I wanted to make videos because automatically most people assume that everyone who is visually impaired is totally blind. </span><br />
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I didn't post the videos here because I was embarrassed. It was really the first time where I had to sit back and look at myself. I'll admit that it was weird but I feel like its something everyone should do. Its a great way to build self-confidence. Since I'm a newbie at filming and editing, the videos aren't the best but I had fun. I often film my vlogs outside while I take walks holding my <b><a href="http://www.essceejulies.blogspot.com/2013/01/2012-in-Pictures-Canon-PowerShot-ELPH-310HS-Review-Photography.html">point and shoot camera</a></b> in my hand. The lens is pointed toward me as I talk to it. This may look weird but I realized that because of my visual impairment I'll potentially have more experiences of "looking" weird.</span><br />
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I also needed the creative challenge to break me out of a writer's block with this blog. I was developing a high level of anxiety about writing because I wanted my posts to be "perfect". Being perfect is something I've discussed before in a previous post <b style="font-style: italic;"><a href="http://www.essceejulies.blogspot.com/2012/09/the-perils-of-peculiar-pursuit-of.html">The Perils of the Peculiar Pursuit of Perfection</a>.</b> Participating in VEDA reminded me that practice makes perfect and that writing is a skill first then an art. Not everything you create will be amazing but the more effort you put into it you'll eventually get there.</span><br />
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Below is one of my videos:</span><br />
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Check out my youtube channel here: </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">My #SSSVEDA Video playlist click <b><a href="http://www.youtube.com/watch?v=iNTfjoiDYDw&feature=share&list=PL9t3Sm6-GgyUUS4GLCQI3pB3Q04cChEyq">here</a></b></span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">If you liked this post then check out:</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.essceejulies.blogspot.com/2013/08/Kim-Nguyen-Varying-Degrees-Of-Visual-Impairment-Visually-Impaired-Vlogger-Youtube-What-do-blind-people-see-VEDA.html"><b>Kim Nguyen: Varying Degrees of Visual Impairment</b></a></span></div>
Anonymoushttp://www.blogger.com/profile/06937487282821017547noreply@blogger.com0