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Sunday, March 8, 2009

Information overload

This past Saturday, Troy and I went to the Southern California Regional Symposium in Long Beach. This is an annual conference hosted by the Foundation for Fighting Blindness. I walked out of there with a raging headache and a brain full of mush! There was so much information, for all retinal diseases. I took about 30 pages of notes, and held onto every single word for over 6 hours! They discussed current clinical trials, as well as discussed some which have ended but are pending FDA approval. I never realized how complicated, long and arduous these trials are - and how much it takes for the patients involved in the trials. There were two women who shared their stories, who are currently involved in a trial for retinal therapy, and they are seeing improvement.

I have high hopes and seeing what has happened to dogs with gene therapy is amazing! One type of blindness is caused by a lack of enzyme in the retina. They have found if they take a virus (which most of us have in our body - and does not make you sick) and they gut that virus, so all you have is the shell, and inject that enzyme, you can basically correct that type of vision. It is MUCH more complex than that - that is just a quick overview. I wish I could find the video that shows the dogs (they are brothers who were born blind). They did a study (injected him with the virus/enzyme) on one of the dogs named "Lancelot". Lancelot's vision was corrected and he was cured! He was no longer blind, there was not improvement, he was cured! It was astounishing to watch, and the river of tears flowed.

It was nice to know their studies regarding stem cell are from 'adult' stem cell and not embryonic. These adult stem cells are basically those found in bone marrow for example. They also used these virus cells for gene therapy, and also used umbilical cord blood/cells.

To be in a room full of families affected by blindness/vision loss as well as sitting next to blind individuals was very humbling. I was seeing glimpses of our families future. I honestly think during my whole life I have only ever met one blind person. Now to see myself trying to get involved in this community and surrounding myself with information left and right regarding vision loss is such a new world for me. Most of the audience was the elderly, due to the disease macular degeneration. It's such a terrible disease.

That is a quick overview. I will find my notebook and write more posts later based on detail findings that we learned. I was just really hoping Gavin would have had his ERG by the time the conference came around, so I could really focus in on that disease and ask intelligent questions to the panel of doctors. I was trying to digest every single bit of information about every disease because we don't know what he has yet. Hence the horrific headache!

I was honored to be able to attend this event. It was great seeing all the technology as well from the vendors who sell equipment targeted towards vision loss individuals. There are so many great things out there to allow them to be independent. I think that is key with any disability.

One take away point - PLEASE DO NOT SMOKE. Every single doctor and geneticist informed the audience you increase your chances of RP (Retinitis Pigmentosa) by 40 percent! Yes, 40. That's huge. RP is a group of genetic eye conditions, and they stressed you don't know what gene you are a carrier of. Especially if there is RP in your family, please don't smoke. RP can set in at any time, and can be a slow "cancer of the vision". You may have this gene, and it may be dominant in your case, but it can set in later in life. Please don't smoke. You can't control your genetic make up, but you can control smoking. I'm not trying to preach here - just sharing the strong suggestions from these doctors who have proof smoking exacerbates vision loss. Vision loss that may even set in later in life.

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