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.
Bill, it sounds as though you have lived out our worst nightmare. My heart and prayers go out to you. I cant imagine what pain you must be feeling. You sound like an amazing father who gave your son a great life. That is its own reward. Best to you, Catie, Brandon's stepmomma.
I too was deeply saddened when I read your message. Although we may not know each other, we are deeply touched and affected by what happens to our boys. May god bless you and comfort you in this time of loss.
My heart goes out to you right now. I was deeply saddened to hear the news of Reid's passing. My heart breaks anytime I hear news like this. I am sorry about your loss and can't imagine. God bless you.
I'm so saddened to hear about Reid. I think this is something that is always in the back of our minds, but is always a shock. I hope you find comfort with your family remembering the joy & memories you have had together.
You are more than welcome. Anytime you want to talk about stuff we are here at ppmd or you can reach us at email@example.com. If for some reason you don't find a place for Reid's equipment (per your earlier message) I can get it to LLU for another DMD boy if you wish. I can't imagine what you are going thru right now. Paul and I are very sad to hear your news.
please take care
Just read your post and am in shock! I am saddeded and so very sorry to hear of your son's passing. I pray you find peace and comfort during this difficult time. My prayers go out for you and your family.
My husband and I recently received your message about needing care for your son. Oddly today at the first page of the PPMD website there is a coordinated organization that says they have services to fill the need you are asking about. You might want to check into that one.
By the way...we live in Riverside too with our 2 sons - Alexander age 10, DMD and Max age 9, not DMD.