Chris and I have three boys, Christopher who is 18 and just finished his first year of college, Tim who is 13 and likes legos and video games and John who is 2 and a very active toddler with a happy disposition. We live in Illinois with our two dogs.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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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.
Hi, I met you at Children's Dec.15th,how is Tim?Chance is on his 3rd wk of PTC124. Haven't seen much of a change maybe it is to soon,how long before you could see a difference?
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We met at the conference--we live in Mukwonago, WI and I found such parallels between your healthy older brother/younger brother with DMD story and our own. I saw your response on Jill's site. Has Tim started the PTC124? How's it going? Nick goes to Cincy mid-October. We're cautiously optimistic....
Thanks for the reply, Ellen. That sounds so good. You mentioned that Tim's behavior was better. Do you have problems with his behavior? My grandson has terrible problems in that area. I wasn't sure it was linked to the DMD or that he is just a hard headed little boy! Has Tim actually started the trial? My grandson has been taking something, maybe placebo, for 4 weeks. There has been no change. How long did it take before you saw any improvements? Let's keep in touch to see how this thing goes.
Hi Ellen, you said Tim had very good results with the first PTC trial. Could you elaborate on this? My grandson started the 2B trial about 4 weeks ago and I am very anxious to hear about your experience and what kind of improvement we might see in my grandson. I see that you are in Illinois. Do you go to Children's Hospital in St. Louis? I am looking forward to hearing from you.