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Tag: Stargardt’s Disease

6 Things Not to Say to a Person with Vision Loss

It is hard enough to cope at times with having a vision impairment, and sometimes comments can really get to you. I know (most) people mean well, but when you get asked the same questions regularly which really have no good answer or are just plain silly, it starts to eat away at you. I…

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What Losing My Sight Has Taught Me

I have now been vision impaired for just over five years. Looking back pre-Stargardt’s, I was a different person. Not necessarily better or worse, just different. The changes in the past five years can probably be attributed to getting older although losing my vision has played an enormous role. Here’s what I've learnt along the…

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The Napping Neccessity

I will admit, I love to nap. I could nap any time of the day, even after I've just slept the whole night. I could nap outside in the sun, inside on the floor, anywhere. I love it. That feeling when my eyes are closed and I doze off into oblivion. The thing is, there's…

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See Through My Eyes Official Launch

We are pleased to announced we will be having an Official Launch! Register at http://goo.gl/forms/NnlbihdMNc

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A Guide Dog Experience

Last week I had an assessment for a Guide Dog. I have been using the cane for some time now (you would know Mr Cane and I have had a rocky relationship if you've been following my blog for a while) and have been considering a Guide Dog for my mobility. Mobility aids are a…

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Chrissy’s Interview on Radio RPH

Founder and Director chatted with Peter Greco on Radio RPH about living with Stargardt's Disease and what led her to establish this organisation. YouTube Video of Chrissy's Radio Interview

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Spotlight on Stargart’s Disease

What is it? Stargardt’s Disease, also known as fundus flavimaculatus, is an inherited retinal disease. It is similar to macular degeneration in its presentation although affects much younger people, with onset usually in children, teens and young adults. Stargardt’s affects the macular which is located in the retina of the eye. The retina is responsible…

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Updates on Clinical Trials

There are numerous clinical trials and research projects happening all over the globe for Stargardt's in different scientific and technological fields giving us great hope for the future. Here are the current clinical trials taking place: Drug Trial of ALK-001 Alkeus Pharamceuticals are conducting a phase 2 trial of an oral drug in the United States. A phase 2…

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We are all unique

A phrase I seem to be continually hearing goes something along the lines of "another person who is legally blind could do it". The most recent time was in reference to attending a residential school for my university course located in another state. I want to get something straight, just because people are classified as…

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When to use a mobility aid

A common question that arises amongst people with Stargardt's Disease and other vision impairments is whether I use a cane, a guide dog or neither. The question then  asked is visual acuity, how it helps and why some people use aids and others don't. I've been thinking about this question a lot lately and hope…

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