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.
Hey Debra, your kids are very cute. How is Alex doing? Kevin is good -- no longer walking but doing lots. Getting into legoes again lately. We're working on an accessible house right now and lots of stress and headaches with builder. We have to fire him but found a great guy to pick up the pieces and hope to be in the house in a few months. Hard once your son is no longer walking and living in a split level house! Have chair lifts but the rest of the maneuvering is tough. Love your dog. Kevin wants a similar one. soon as we get in the new house. take care, Patti Frank
I just watched you on the MDC Webinar of July 20th. Good job! Do you work or volunteer for MDC (not that volunteering isn't work, you know what I mean) and for how long now? I offered to help the Chapter here in Montreal for the english community (because my french might only serve to confuse people!) but no one has ever answered me. I went to high school with Kevin Harrison (he is younger than me, but who could forget that smile of his). I'm sure you must have met him.
My son's team Super Simon Hogue was one of the top fundraisers for the Walk for Muscular Dystrophy here (I think he was #4 or 5). And we are trying to get the school and community understanding what DMD is. We got a story about Simon published in the town newspaper. We organized the first "HOP for MD" at the boy's school and with the help of some very cool teachers, are going to make it bigger and better next year. We also went on local CTV news and fought successfully for a second disabled parking permit. I'm not shy anymore about being an advocate for my kids.
Let me know if I can do something with MDC at the National level please.
How are you? Frank and I were thrilled to hear that Alex was on the GSK trial. It has been a while since we chatted. Tory has been on the trial since March in London. He has just recieved shot 21. Love the pictures - shoot us off an email sometime and let us know how you are all doing.
I am sorry it took me a while to respond. I do not come to this website very often. You can always send an e-mail to me at
email@example.com or contact me on facebook. Are you on facebook? If you are, lets connect there too.
I hope your doctor recieves funding soon for the vibration therapy. Do you know how much money they need? Perhaps an organization can help put with the funding.
Merry Christmas to you and your family. I hope 2010 is a good year for all.