My name is Amanda. I have two sons, Riley 4 months and Christian 6 years. Riley was diagnosed with DMD on June 25th I live in the chattanooga tn area. Anything else you want to know....message me
About my family:
DMD has ran in my family for as long as we know. My son is the first in 20 years to have it due to the fact that my mother is an only child and I have one sister. Riley is the 7th in the family to be affected.
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.
It sounds as though you are still adjusting to Riley's diagnosis, even though you have other family members in the past affected, it must be very difficult for you I'm sure (actually I have to be truthful and say I can't image how you are coping right now). I don't know if you bring Riley to Chattanooga to our practice or not (I'm out of town right now), but we have a wonderful medical director (Dr. Paul Knowles) as well as another neurologist, myself and another nurse practitioner. If you want to bring Riley to our office please let me know and I will get him in. Right now our appointments for new patients are booked out about 3 months, but I can "work some magic" for you. Please let me know what I can do to help.