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.
It was great to meet you at conference this year. Sorry about the circumstances. How did your appointments go? Are you getting all of your questions answered? I know it is a lot to digest. You are on the right track and getting the best information out there though. I loved the pictures of the boys. Too cute!
It was great meeting you and your beautiful wife at the conference! I'm so glad you were able to make it to the conference so soon after Connor's diagnosis. There is no better place to get information and meet other families to help you through this. Thanks so much for sharing all of your pictures- they are precious!! What a beautiful family you have.
Thanks for the uplitting message. At times it still hard to believe that he has this disease. I have faith that a cure it out there. Your right about one thing.... We will cure our sons one way or the other.
I just have to say I fell in love with your picture! That is the most beautiful little man you have there! I can just imagine the giggles (from both of your sons) you get when you cover their tummy's with kisses. I think God makes our boys extra beautiful to remind us of how lucky we are to have our angels :)