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 DConnell, +Gary7, FiB3R and 1 other 4 Share Link to comment https://www.neowin.net/forum/topic/1290374-my-son-made-the-paper/ 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 https://www.neowin.net/forum/topic/1290374-my-son-made-the-paper/#findComment-597298606 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 https://www.neowin.net/forum/topic/1290374-my-son-made-the-paper/#findComment-597298614 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 https://www.neowin.net/forum/topic/1290374-my-son-made-the-paper/#findComment-597298622 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 https://www.neowin.net/forum/topic/1290374-my-son-made-the-paper/#findComment-597298624 Share on other sites More sharing options...
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