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Started this discussion. Last reply by Bains Oct 7, 2008. 8 Replies 0 Favorites
Started this discussion. Last reply by Sharyn Thompson Aug 13, 2008. 15 Replies 0 Favorites
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My name is Ron Kohudic. I work at Siren Interactive, a digital agency in Chicago that is focused on understanding the needs of patients and physicians dealing with rare diseases. I am part of a small group that is doing research in order to develop new technology to help boys with DMD and their parents, caregivers and health care professionals within the community.
Please let us know if you would be willing to speak with one of my colleagues or I in order to help us better understand DMD from your perspective, as well as to better understand your needs or any specific areas that we could potentially assist you in treating boys with DMD.
Please let me know if we can contact you at your convenience.
Thank you for your time and cooperation in this effort.
I searched homeschooling on here and came up a few comments from you where you mentioned homeschooling your son. Are you still homeschooling? I'd love to ask you some questions if you don't mind, it's something I'm considering for my son.
Could you tell me what medications you use for DMD and could slow down the disease!
Thank you very much
Sorry it took me so long to respond...Blake went to Canine Assistants camp this summer, and we met another boy from Dacula with DMD. If you would like to email me, I can connect you with his mom - they are a really sweet family. Her son and Blake both ended up going to DMD camp a couple of weeks ago. And we'd love to meet you all sometime! I will send you a private message with my email.
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