Archive | November, 2011

VOTE FOR RYAN: 5th Grader with Stargardt’s up for an Award!

25 Nov

Hi,

Today I saw a post on Twitter (using my hashtag search for #Stargardt’s as mentioned in a previous blog plost here) and found a piece about a very inspiring you chap called Ryan Basso.

Ryan is registered blind due to his Stargardt’s disease, however this hasn’t stopped him from working hard to build awareness, support charity and raise money for Foundation Fighting Blindness.  He also does work to support Cancer’s and Alzheimer’s too!

For Stargardt’s he has done Vision Walks and sold Lemonade and Cookies to the community – excellent work!

Ryan’s work has been recognised and he has been listed as a finalist for the Zylie’s Awesome Kid’s Award (Z.A.K Award – click here for more information on what the awards are about)

Please vote for Ryan and his great attitude and hard work.  To Vote, click the picture below which takes you to the voting page, the  voting button is in the top right of the page, i have highlighted in a red box in the picture below:

Good Luck Ryan, Keep up the good work and best of luck with your Stargardt’s !!

How to use Twitter to find information on Stargardt’s Disease

23 Nov

Hi.

I have previously blogged about how to use Facebook and Google Alerts for finding Stargardt’s Disease information, today I would like to share with you how to use Twitter to also keep up to date on new information and to connect with others with interest in Stargardt’s.

 For those of you who are unaware; Twitter is an online social networking tool that allows users to post quick updates to the internet (known as Tweets) which can then be read by anyone who either follows your Twitter Account, or is searching for any particular words you include in your Tweet, e.g. ‘Stargardts’.  There are almost half a billion Twitter users around the world, and on average there are 300 million Tweets per day – Twitter is often referred to as the Text Message/SMS of the Internet.

Setting up a Twitter Account and Logging In.

The first thing you will need to do if you do not already have a Twitter account will be to visit www.Twitter.com and join up:

Once you have signed up, then login 🙂

Searching for Stargardt’s information

The best way to search for info in Twitter is to use what is called a ‘Hash Tag’.  Essentially, a Hash Tag is a quick way of highlighting keywords in your Tweets as you post them, so that others can search for key words and your Hash Tag will be picked up and displayed to the searcher.  A Hash Tag is created by putting the ‘#’ symbol before any key word, for example:

  • The Hash Tag for ‘Stargardt’ would be ‘#Stargardt’

So by searching for ‘#Stargardt’ in the search bar will bring up all the relevent Tweets that contain the word Stargardt, please see below example:

In the above you can see that I have searched for ‘#Stargardt’ and it has provided some results of Tweets containing that Hash Tag.  You will also see there is an option to ‘Save This Search’ too.

How to Reply to people on Twitter

Once you have searched and you have found a Tweet you want to reply too, hover over the Tweet and it will provide you with the option to ‘Reply’, as per below:

How to connect to the new websites and information being shared in Tweets

You will also see in the picture above that I have typed a link in my Tweet, this would take you to this Stargardt’s Blog, however other people may be posting links to their blogs or to reports about Stargardts or videos about it on YouTube, so be careful to read the Tweet and if you like what you read, then click the link to learn more 🙂

How to Share what you have found

If you have found a Tweet containing information you would like to share, you can Re-Tweet the post, which will then republish it from your account and also name the person your Re-tweeted it from.  In the same light, someone can also Re-Tweet anything you post and you will be name checked in their Tweet.  You can Re-Tweet and share by hovering over the Tweet and selecting the ‘Retweet’ button like you can see in the picture below:

Who to Follow on Twitter.

You will notice that Twitter also suggests people to follow who talk about Stargardt’s, although be carefull who you follow – Twitter doesn’t get it right every time.  By following someone, you will see all of their Tweets on your Twitter homepage, regardless of whether is mentions #Stargardt or not.

I can be followed by my user name @GarethKitson –  Click on my name there and it will take you to my profile, you can follow my tweets and also talk to me on Twitter too.

Next Steps.

Get on Twitter.  Sign up and get searching for Hash Tags and get Tweeting and Re-Tweeting Stargardt’s information… Perhaps one of your first Tweets could be mentioning this blog (by copying the URL Web-Address and putting it in your Tweet) and telling people that it is about #Stargardt’s 😉

And, feel free to follow and/or mention me – @GarethKitson – and I will follow you back 🙂

I hope this has helped, and please also share this Blog on your Facebook pages too, as it will help more people learn about it and Twitter too.

I will write another blog soon about how to use other tools to search for Stargardt’s info.

Please let me know what you think in the Comments section below the blog 🙂

Cheers!

Gaz

Using Google Alerts to keep up-to-date with Stargardt’s Disease information

16 Nov

Hi,

In addition to my blog about Stargardt’s Groups and Pages on Facebook, I would like to share another easy and useful way of keeping up to date with all of the Stargardts related content on the internet as it is posted; either on Blogs, Websites, News, Press Releases, Videos etc.  The answer? – Google Alerts.

Google Alerts are updates that are sent automatically by Google to your Email Inbox.  They’re really easy to use, simply enter the topic you wish to monitor (in this case Stargardt’s Disease), and Google will do all the searching for you and email you when it find something new!

How To Find It

To access it – visit the Google Alerts website at www.Google.com/Alerts

How To Set Up Your Alerts

On the Google Alerts website you are presented with a few options on what you want to search for:

In the search box, next to the Google Alerts logo, enter you search criteria.  You may wish to set up Multiple Google Alerts to take advantage of the different terms people use in their content, and so Google will send you alerts on everything.  Here are a few suggestions on what to set up (you will have to set up each Alert individually)

  • Stargardts Disease
  • Macular Degeneration

Now to set what you search for and how often you get Alerted.

  • TYPE: – I suggest leaving it to the default option of ‘Everything’ – this means Google will send your Alerts for any Stargardts related information, if you only want a specific media type then chose what you want.
  • HOW OFTEN: – Basically, how often do you want to receive emails? in real-time ‘As it happen’s’ or you can get a summary email either once a day or once a week. 
  • VOLUME:- Do you want what Google considers to be good content, or ALL content? – I suggest ‘All’
  • YOUR EMAIL: – Simply enter your email address to receive the emails

You will then be taken to a new page where it confirms you have created a new Alert, and you will also receive an email from Google Alerts asking you to verify that the email address provided does actually want to receive Google Alert emails, in that email Google sent you, click on the ‘Verify this Google Alert’ link and you are up and running! this can be seen in the picture below where the red box highlights the ‘Verify’ link:

Finding Your Google Alert Emails

To find your Google Alert emails fast and easy, it may be worth setting up a sub-folder within your email Inbox (probably best calling it: GOOGLE ALERTS), and set up a rule to automatically re-direct all Google emails into this new sub-folder.  As we know the email address Google emails you from, you can set up a rule by specifying that any email from googlealerts-noreply@google.com go straight into your new sub-folder

I hope this helps you keep up to date with all Stragardt’s related information from all over the Internet…  let me know what you think! and if you are struggling setting up your Google Alerts, let me know via the comments section below and I am happy to help!

Thanks

Gaz

Stargardt’s Groups and Pages on Facebook

15 Nov

Facebook serves a great way to stay in touch with friends and share your photo’s with them, however it is also much more than that.  Recently i have found several Groups and Pages on Facebook dedicated to spreading the awareness and how best to support Stargardt’s.

I want to share them with you – you can access them by clicking on any of the below:

Facebook Groups

  1. Stargardt’s Awareness Group
  2. Stargardt’s Eye Disorder Support Group
  3. Stargardt Disease – Macular Degeneration Support Group
  4. The Art of Going Blind With Stargardt’s – Support Group

Facebook Pages

  1. Alyson Mitts ~ Stargardt’s Disease Support Group
  2. Stargardt’s Research Group
  3. Stargardt’s Disease Information
  4. Foundation Fighting Blindness

I hope these are of help, I will try to continue to add more that i find, and if you know of any others, please do leave a comment and let me know and we will update the list.

I will also do a blog about Twitter and YouTube too.

Many thanks

Gaz

Stargardt’s disease featured on MTV True Life

15 Nov

As part of the MTV True Life series (a show typically only broadcast in the USA), MTV follow young people in a bid to show the public about how a particular illness, disability or addiction can affect the individual and also those close friends and familiy around them.  In some cases it also covers how these challenges can be overcome through hard work, focus and support from close family and friends.  One of the most recent episodes, titled ‘MTV True Life – I’m Losing My Sight’ followed 3 teenagers who are overcoming the challenge of losing their sight, one of which has Stargardt’s disease:

Austin
Austin is a High School Senior, he underwent a dental operation which went wrong and put him into a coma, upon recovering from the comma he awoke to find that he was now blind.

Blanca
Blanca is in denial about trying to accept her recently diagnosed Stargardt’s disease, her family are there to support her, although she is still concerned about how aggressive her sight loss may be, especially as she is also pregnant.

Jeremy
Jeremy has a genetic disorder which will ultimately lead to blindness, while this scares him, he is more concerned as to whether his younger brother and sister will follow the same path.

The video is hosted on MTV.com, although unfortunately I have been unable to watch it as this video is unfortunately only available to US residents and blocked to all outside countries due to copyright. I have checked the UK MTV.co.uk site and can not find either True Life as a whole or the episode online.  If you are in the US, you can watch the video by clicking here

For those outside of the US, you can however watch the episode preview/trailer below.

I am keen to hear your thoughts and comments from those who have been able to watch the video, and if someone finds it on another site outside of the US, please let us know in the comments section below.

Many thanks

Gaz.
Twitter: @GarethKitson

Under Construction

14 Nov

Hi,

I am in the process of building this blog, hopefully will have it up and running soon.

The purpose of the blog will be to help spread awareness about Stargardt’s disease and offer insights into living with and supporting someone close who has it.  It will draw on real world experience and also look to bring together information from arround the world.

Please do come back and keep checking.

Thanks.

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