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.
Websites
Stargardt.Net is a tremendous resource for those with the condition. - http://www.stargardts.net/
Stargardt Press - Is a mostly Spanish language site updating information on Stargardt's and other eye diseases. - http://medicablogs.diariomedico.com/stargardtpress/
Social Networks
Twitter
Use or search for the hashtags #stargardts #stargardt or #StargardtDiease to connect with others on the site.
Facebook
Groups
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.
Stargardt Disease - Macular Degeneration Support Group (Closed/Private)
Stargardt's Awareness Group (Open/Public)
STARGARDT'S CENTRAL (Closed/Private)
Stargardt's Disease Forum (Closed/Private)
The Art of Going Blind w/ Stargardt's - support group (Closed/Private)
Google+ (Plus) Communities
Stargardt's Disease Awareness: This is a public group anyone is welcome to join.
- https://plus.google.com/communities/106991972989952787499
Stargardt Disease Support - This a private group for those who have the disease to connect with others -
https://plus.google.com/communities/100039691993030726093
Stargardt Bloggers
Stargardt.Net is a tremendous resource for those with the condition. - http://www.stargardts.net/
Stargardt Press - Is a mostly Spanish language site updating information on Stargardt's and other eye diseases. - http://medicablogs.diariomedico.com/stargardtpress/
Social Networks
Use or search for the hashtags #stargardts #stargardt or #StargardtDiease to connect with others on the site.
Groups
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.
Stargardt Disease - Macular Degeneration Support Group (Closed/Private)
Stargardt's Awareness Group (Open/Public)
STARGARDT'S CENTRAL (Closed/Private)
Stargardt's Disease Forum (Closed/Private)
The Art of Going Blind w/ Stargardt's - support group (Closed/Private)
Google+ (Plus) Communities
Stargardt's Disease Awareness: This is a public group anyone is welcome to join.
- https://plus.google.com/communities/106991972989952787499
Stargardt Disease Support - This a private group for those who have the disease to connect with others -
https://plus.google.com/communities/100039691993030726093
Stargardt Bloggers
My Blind Side is written by Tanna who writes about life with Stargardt's - http://myblindsideblog.blogspot.com/
See Through My Eyes is written by Chrissy Renee who is an Australian blogger living with the condition - http://www.stargardtsdisease.blogspot.com/
Living With Stargardt's Disease - Is written by Bhumika who lives in India - http://stargardtsdiseasesupport.blogspot.com/
Living With & Supporting Stargardt's Disease - Is written by Kayley Rose who doesn't let Stargardt's slow her down in the UK - http://stargardt.wordpress.com/
Living with Stargardt's - Is written by Jen who has had Stargardt's for 20 years - http://living-with-stargardts.blogspot.com/
Vivencias de Ana Mirada Stargardt - This is a Spanish language based blog written by Liz who lives in Mexico - http://miradastaragatdy.blogspot.mx/
Are You Looking At Me? - Living With A Visual Impairment - Is written by Heather who writes about being a mom with Stargardts - http://hgarbitt.blogspot.com/
The Checkered Eye Project: Blog - Is written by Libby who is working on making the lives of the visually impaired better - http://www.checkeredeye.com/blog/
Diamond Panes - Is written by South African writer Leanne who writes so eloquently about life - http://www.diamondpanes.blogspot.com/
Creative Insight - Is the blog of visually impaired Artist Michael Williams - http://crativeinsight.blogspot.com/
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. - http://helpinglexi.blogspot.com/
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. - http://maonoyachini.com/
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. - http://www.aisquared.com/blog/tag/maurie-hill/
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." - http://www.blindgirlssee.com/
Through The Glass, Dimly - Information about Stargardt's Disease from a guy living with it. Who has been chronicaling his stargardt's journey since 2010.
Video Playlist: Others With Stargardt's Disease
I made a video playlist of people talking about living with Stargardt's Disease. The playlist can be found at the following link:
https://www.youtube.com/playlist?list=PLlvAOpdEfRvMPCj3lTanYJGXLAPpRpl-W
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. - http://helpinglexi.blogspot.com/
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. - http://maonoyachini.com/
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. - http://www.aisquared.com/blog/tag/maurie-hill/
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." - http://www.blindgirlssee.com/
Through The Glass, Dimly - Information about Stargardt's Disease from a guy living with it. Who has been chronicaling his stargardt's journey since 2010.
Video Playlist: Others With Stargardt's Disease
I made a video playlist of people talking about living with Stargardt's Disease. The playlist can be found at the following link:
https://www.youtube.com/playlist?list=PLlvAOpdEfRvMPCj3lTanYJGXLAPpRpl-W
2 comments :
thanks for the links :)
You're welcome Bhumika! :)
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