Wednesday, February 13, 2013

Discussion: Genetic Testing

By Jerome Walker,Dennis Myts (Own work) [Public domain], via Wikimedia Commons | Image Wiki  | Image File

"You are not the father!" I know, I know interesting phrase to start off this post with, but trust me read further along and it'll make sense. For those of you in the US who are familiar with daytime TV you know the phrase is from The Maury Povich Show. One of the most popular topics on the show deals with paternity of children which are conducted via DNA analysis. DNA analysis isn't just performed with issues of paternity but also in the areas of crime forensics and anthropological studies to name a few.

Often times when it comes to issues of genetics or DNA we are concerned with paternity or in criminal cases but not when it comes to having children. When I was first diagnosed with Stargardt's I was concerned with how vision loss would affect my ability to be a mother. (There are several wonderful visually impaired moms out there) I wasn't so much concerned about the possibility of passing this disease to my potential children or even on how I inherited the disease myself.

Now Stargardt's isn't the only inherited disease in the world but diseases like it do bring up discussions in family planning and genetic counseling. Many Stargardt's patients are advised to get genetic tests done so they know what form they have and for research. I myself haven't had the test done, but hopefully will so in the future. If you or a loved one has Stargardt's you can check out Asper Biotech's DNA Testing Services.

I just wanted to talk about this topic as a discussion. Just wanted to know if other Stargardt's patients have had the DNA tests done. I also want to know from others how do you think genetic testing will affect people's choices in family planning. Leave your comments below and share this post.

Monday, February 11, 2013

Sh#t People Say to Blind People

"Why is there braille on drive-thru ATM machines blind people cant' drive?"

Response: Have you ever heard of a passenger's seat

"Why is their signs in restaurants saying 'Braille Menu Available', blind people can't see that?

Response: Blind people have sighted friends and family.

"Why would blind people have an iPhone?"

Response: There's an accessibility app for that.

"I'm going to speak slowly and loudly to you so you can better understand me."

Response: So by doing that you're saying being blind means that I'm also deaf and have impaired comprehension.... okay.

"See if I cover my eyes I can see what a blind person sees."

Response: Actually a very small percentage of the visually impaired see darkness. Most do have light perception. 

"You're not blind you're faking it."

Response: Just because I have ambulatory vision (the ability to see around a room) doesn't mean I can see everything. (This is how most people who have low vision see.)

Monday, February 4, 2013

February Update & 111 Things List

Its time for an update!
I don't know if regular followers of mine remember back in November my post A Bump in the Road. I was having a little difficulty with my health insurance, well its resolved now. So I can get a better update on the state of my vision with my doctor. Also I have a question for anyone out there who lives in the New York City Metro Area. Can anyone recommend any good low-vision specialists? Feedback would be so greatly appreciated.

111 Things List
On tumblr which serves as my personal blog I created the 111 Things List. It could be described as a bucket list or even similar to a New Year's resolutions list. Its really based off of the 101 Things in 1001 Days List from The difference is this list isn't terminating like the previously mentioned list. When you complete one item you create another one, this way you keep creating your life experiences. I came across the 101 Things in 1001 Days list from Amy Schmittauer, who is a YouTuber and social media expert. She also made the video I watched that finally convinced me to buy my digital camera that I absolutely love. So shout-out to her. If you're doing something similar I would love to hear about it. You can visit my list here.

Other Things

I want to thank VisionAware for featuring this blog on their blogroll of visually impaired bloggers. So thanks!

Also I made a collaborative blog on tumblr called These Perspectives. I noticed there is quite a large visually impaired community on the site so I wanted to create a blog for people to share their stories. If you are on tumblr and would like to be a collaborator of the blog you can send me a message through my contact page which is here.

Lastly, if you use Twitter and you or a loved one want to connect with others who are living with Stargardt's you can check out my twitter list here.

Don't be shy to leave a comment on any of my posts. I made responding to my posts easier and you can post anonymously if you would like.

Friday, February 1, 2013

Michael A. Williams, Award-winning artist w/ Stargardt's

Michael A. Williams has Stargardt's Disease and describes himself as an "Inspirational Blind Artist" He's been creating outstanding art pieces since he was a child and was diagnosed with Stargardt's in his teens.

In the above video Mr. Williams talks about living with Stargardt's, his art and his mission to encourage the visually impaired to get involved in the visual arts.

Following link will take you to Mr. Williams website where you can view and purchase some of his beautiful paintings.

Thursday, January 31, 2013

AMC Theatres Making Their Theaters Accessible

So AMC Theaters is in the process of making their theaters more accessible for visually and hearing impaired individuals. The company says that the upgrade will be fully rolled out in 2014.
Check out more at the following link:
Hearing-impaired, vision-impaired moviegoers to get help at AMC theaters

This is pretty cool what do you think? Don't be shy to leave your comments below.

Friday, January 25, 2013

Sami Stoner: Teen Cross Country Runner w/ Stargardt's

Being legally blind literally hasn't slowed teen cross country runner Sami Stoner down. The above video titled A Girl's Best Friend is from the ESPN series E:60 showing Sami living and thriving with Stargardt's Disease.

Thursday, January 24, 2013

Fleksy - Happy Typing!


I love tech gadgets especially my cell phone (HTC EVO 4G) but I don't text message. What I think is cool about the above video is how blind people were beta testers for this predictive text message app. The mobile phone app is called Flesky and is designed to use predictive text technology to send more accurate messages. The company claims that the app is so accurate you don't even need to look at the phone to type.

To be a Beta Tester for the Android App or Spainish App go here:

To see the preview for iPhone go here:

Do you know of any other products where blind or visually impaired individuals helped develop a product for the masses? If you are a big texter what apps do you use?
Leave your comments below.

Some Misconceptions About Blind People

On one of my information seeking journeys on the vast spacial plane that is the interwebs (internet for non nerds) I came across some information about misconceptions about blind people. Many sighted people and even some people in the blind/visually impaired community often believe these misconceptions simply due to ignorance. One article I found was Delco Daily Top Ten: Top 10 Misconceptions about Blind People. The article was by David W. Wannop who "is a music journalist, talent developer, booking agent, and show host based in Center City Philadelphia.