Monday, November 10, 2014

Clinical Trials: Ocata Therapeutics (ACT) - Stem Cell Therapy

Most rare diseases such as Stargardt's presently have no treatments available. So its very exciting that there are a few clinical trials taking place investigating potential treatments. 

Tuesday, October 28, 2014

#TEDTalkTuesday: What are stem cells? - Craig A. Kohn

In my last post I talked about clinical trials, more specifically clinical trials that are currently being done in regards to Stargardt's.

Tuesday, September 30, 2014

Video: Clinical Trials

Before I go into more detail about clinical trials involving Stargardt's I made the below video giving an overview of clinical trials.

Tuesday, September 23, 2014

Video: Hope for a Cure & Living Life

quote-just-because-the-past-didn't-turn-out-like-you-wanted-it-to-doesn't-mean-your-future-can't-be-better-than-you-ever-imagine
"Just because the past didn't turn out like you wanted it to,
doesn't mean your future can't be better than you ever imagined.
Slowly losing my central vision to Stargardt's Disease 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.

Tuesday, August 26, 2014

Video: My Last 2 Videos

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. 

Friday, July 25, 2014

Video: The Prospect of Bring a Mom

a-newborn-baby-hand-clasped-around-adult-fingers
I snapped a photo of my niece holding on to my fingers with her adorable little hand.
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.

Friday, July 11, 2014

Video - Being Aware of Other Senses | Essceejulies

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.

Tuesday, July 8, 2014

Video - Reasons To Smile | Essceejulies

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

Friday, June 27, 2014

No video this week & other things.

I didn't post a video this week on my youtube channel. 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. 

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 (@Essceejulies) I posted the below vague tweet:
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!

Oh and also I wanted to remind you that if you're really into Google+ I created two Stargardt's groups over there. One is a public awareness group and the other is a private support group. I encourage you to join either group as a moderator or contributor.


Awareness Group: 

https://plus.google.com/communities/106991972989952787499

Support Group:
https://plus.google.com/communities/100039691993030726093



Friday, June 20, 2014

My Latest Video: Reconciling Identity


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 TED Talk Tuesday post about Inspiration Porn.

Tuesday, June 17, 2014

#TEDTalkTuesday: Inspiration Porn and the Objectification of Disability: Stella Young

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.

Monday, June 16, 2014

Rolling out My New Channel


The roll out of my new youtube channel Essceejulies 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

Tuesday, May 27, 2014

New Youtube Channel | Essceejulies

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.

Tuesday, May 13, 2014

Tuesday, April 15, 2014

#TEDTalkTuesday - Sam Bems' Philosophy for a Happy Life

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!”?

Wednesday, April 2, 2014

Two-Year Stargardt's Anniversary and I'm Back

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 I was diagnosed with Stargardt's. It really doesn't feel like its been two years. In the video below I talk a little more about it.


Wednesday, January 1, 2014

My Vision



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 Stargardt's Disease.

Others With Stargardt's Playlist:

What I See Playlist:

Watch Previous Video here: http://youtu.be/jWdL_sXg3fs