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 me 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 am trying to connect with other families in Chicago with sons with DMD around my son's age (Charles just turned 7 in Aug). We live close to UIC. If you are interested in connecting with us please leave a comment on my page.
I am new to this site as I am from the UK. I am mom to George, age 5, with DMD. I have some amazing friends who are cycling 20,000 miles for Duchenne. Starting in Halifax and cycling via Augusta and Rochester, Buffalo, Chicago, Mineapolis...Vancouver down to SF, LA and then all the way down to Argentina.
Please join the group "Cycle the Americas". I think they will be cycling near you - if are interested in finding out more or meeting them on their journey (they really want to meet local communities and DMD families) please get in touch.
I spend every spare second campaigning for research and awareness of DMD - would be great to have you on board with this adventure!