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 noticed that Daniel has the same deletion of 50 as my 2 year old Robert. How is he doing? Any learning problems -- it is too early to know for my son...
I also sent you a frind req on FB.
At 12:24pm on September 26, 2009, Kim Maddux said…
Hi - Nice to meet you. Yes, I actually grew up in Nederland, TX. Graduated high school from NHS. I moved here 13 years ago when I got married. My mom and sister now live in San Antonio. I love Austin...have friends there. My son, Alex just turned 10 yesterday. We survived a sleepover with 9 boys. He is doing very well. Alex is missing exons 8 to 19. Your son is adorable. Take Care.
We are in South Austin in the Circle C area, but are happy to get together with you guys sometime. I am very sorry that you and your family are having to deal with Cameron's diagnosis, but there are some really wonderful parents in Austin for support. We found out about Daniel two years ago last month. He just had his fifth birthday. I am going to the PPMD Parent Conference next week in Philadelphia. If you would like to get together sometime after that, I'll be happy to pass along anything that I learn at the conference.
Just wanted to say welcome and tell ya that you should join our "Texas" group--the more, the merrier! We live in NW Houston. I think there about 21 in the group now and we are trying to organize a big gathering so we can all meet. Have a great week! Jill (love your pics--Daniel is a handsome little fella!)