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.
Thanks for joining the 3-7 group. I also have a 13 year old and a 10 year old. Both are still doing great. We just got back from seeing Dr.Wong and she is very happy with them. How is your boy doing?
Sorry I haven't been on the site regularly. I would like to hear more on your son's progress as one of the things I have always wondered is whether the same deletions will have same progress. Stefan turns 14 in a couple of days and although he can still walk in our house anything more than that he rather uses his shoprider. His heart and lungs are doing very well and his weight is under control. How is your son?
I'm sorry I wasn't able to get back to you before our trip. We had three very full days at CCHMC, so I didn't want to commit to meeting you because we always end up having added appointments that aren't on our itinerary and already didn't even have time for lunch on one of the days. I hope that your visit went well.
I tried calling yesterday as soon as I got your message but your mailbox was full. You must be a popular person :) I guess you are seeing Dr. Wong today. I wish we were there at the same time...we won't be going to see her until July 1st. I can't wait to talk to you to see how your visit went. My home number is 512-248-2630. Call when you can. I would love to get together with you guys when we are in Atlanta. My family lives north of the city in Jasper. I'm SO glad we found each other!
Stefan has just started using a shoprider 4 wheel scooter because he gets tired quite quickly these days if he walks. He is turning 14 in JUne so I suppose he is doing well being able to walk in the house and getting into and out of the bath on his own. His lungs and heart is still very good. How is your son doing.