soniqstylz Posted March 1, 2016 Share Posted March 1, 2016 (edited) Yesterday, Feb 29th is recognized worldwide as Rare Disease Day. My son has GM1 Gangliosidosis, diagnosed in 2011 -- since then I've been advocating for him and for those with rare diseases. So we got the local paper to write an article, and the person who is doing a documentary on him took pictures. Here's a link to the story online: http://www.daytondailynews.com/news/lifestyles/health/living-with-a-rare-disease-armands-story/nqYsX/ Edited March 1, 2016 by soniqstylz Draconian Guppy, DConnell, +Gary7 and 1 other 4 Share Link to comment Share on other sites More sharing options...
Draconian Guppy Posted March 1, 2016 Share Posted March 1, 2016 Best to your son mate! Never heard of the disease https://en.wikipedia.org/wiki/GM2_gangliosidoses soniqstylz 1 Share Link to comment Share on other sites More sharing options...
soniqstylz Posted March 1, 2016 Author Share Posted March 1, 2016 2 minutes ago, Draconian Guppy said: Best to your son mate! Never heard of the disease https://en.wikipedia.org/wiki/GM2_gangliosidoses Tay-Sachs is much more well-known, but closely related. My son has the late infantile, and luckily a lot of work on a cure is being done https://en.wikipedia.org/wiki/GM1_gangliosidoses Link to comment Share on other sites More sharing options...
+Gary7 Subscriber² Posted March 1, 2016 Subscriber² Share Posted March 1, 2016 All the best to your son. I hope that a cure will be found soon. soniqstylz 1 Share Link to comment Share on other sites More sharing options...
soniqstylz Posted March 1, 2016 Author Share Posted March 1, 2016 Just now, Gary7 said: All the best to your son. I hope that a cure will be found soon. Thank you! He's in a clinical trial up in Minneapolis with some of the best doctors in their field, and they call him their poster child Draconian Guppy, FiB3R and +Gary7 3 Share Link to comment Share on other sites More sharing options...
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