Saturday, March 26, 2011


I have now known I have had Stargardt's for 2 years. Sometimes I think I have accepted it, yet there are other times I still think "why me".

For instance, I was in the car tonight looking ahead of me thinking that the action going on in front of me was one big blur. I feel like my blind spot is expanding and is taking up more of my view of the world. It almost scares me a little bit as I am the type of person that likes to see, hear and know every detail of what's going on in the world around me. I suppose you could say I'm a control freak!

So this whole diagnosis of Stargardt's has impacted me enormously, and has affected the control I have had on the world. It makes me think that this has happened to me for a reason and maybe it's going to teach me a life lesson - to let go and live no matter what you are faced with.

This is easy to say yet extremely hard to do. Even though there might be days that are tough and upsetting, it's important to always look at things from a positive angle - I may not be able to see the entire detail in front of me, but I can still see that there are lights and scenery! I guess things are only as bad as you make them, and if we can all face losing our sight at such young ages, imagine the other things we can accomplish in our lives!!

Moral to the story - always stay positive even when it may seem like there is nothing positive about the situation, if you look closely enough, you will find something that lifts your spirits!!!!

Wednesday, March 23, 2011


Check out the latest clinical trail being conducted in the US and France. The research into StarGen has been going on for some time, and below are some links following the progress.

2011 StarGen

2009 StarGen

StarGen is a gene therapy developed specifically for Stargardt's. If successful, it would consist of only one treatment directly into the retina which is great news.

Gene therapy involves treatment of the actual affected cells of the body. It can remove damaged genes, alter the genes or insert genes into a particular cell, in this case in the retina. Gene therapy studies are focusing predominantly on hereditary diseases, such as Stargardt's. Some problems noted with gene therapy include immunosuppresion and problems with viruses that may be used to carry the gene.

It is seeming like a treatment is inevitable and likely to be in the near future, so it is important for us all to keep our spirits up and focus on enjoying the experiences we are going through, whether they be positive or negative!!

Check out this website also for more info:


Sunday, March 6, 2011

Update on Advance Cell Technology Progress

ACT, who were granted permission last year to conduct a human clinical trial treating Stargardt's patients with stem cells, has announced that they can procure embryonic stem cells without embryonic destruction - a positive ethical step. They state that they are also hoping to progress to the second phase of the Stargardt's specific trial in the first half of this year.

Check out the link below:

Advance Cell Technology Update