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Yep, there is active research going on looking to learn more about, and eventually develop treatments for Stargardt's disease. There are two active genetic studies going on that I'm aware of. If you have Stargardt's they may be interested in recruiting you also...especially if you are a late onset (over 20 years old). If you want to get involved, send an e mail to me at webmaster2@mcglamry.net. If they accept you into the study, they will have you fill out about a 20 page questionnaire (complete with medical history on your parents) and ask for blood samples. In my case, they contacted my parents and got the same things from them. I've been asked, why don't I just post the info? Well, one of the things I found out when I was trying to figure out how to deal with this disease is that the people working to fight this monster on our behalf are VERY busy....and that is an understatement. If I post their contact information, they will start getting people contacting them with questions. Let's face it, there are forums to get questions answered....this is one of those forums. We need the researchers to stay focused on what they are doing, not answering questions from the internet. So, if you have questions, I'll be glad to field them, or you can research it yourself at the MD Support website, the Foundation Fighting Blindness, or Macular Degeneration International. These sites will contain a lot of factual information. The best source of information on living with the Stargardt's is going to come from others who are also dealing with the same thing. I turn to the MD Support mailing list for this. |