Sure -- but you probably know more than I do! My email is rickilewis54@gmail.com
At 3:01pm on September 24, 2013, Amy Hemming said…
Hi Chris. I believe we may know each other. I work at the same company as Chuck. Maybe we can meet at a park in the next few weeks with our boys one Saturday?
There hanging in there my older brother is hanging on and being very strong and my little brothers still mobile so that's something to be happy about my moms also being very strong with the whole situation thanks for asking hows your son doing?
Chris, Quinten is doing well. We are approaching the 7 year anniversary of Quinten's diagnoses, so life is about to get crazy busy with our annual/semi annual appointments. He has really been struggling with being board lately. He does not like to go out in the cold, and it is a lot of work to get all bundled up to go outside (not to mention trying to move around in all of those clothes). I need to post, to get some ideas. How is Henry doing?
At 7:23pm on November 29, 2012, Dean Johnson said…
Chris: It is great to get connected. I have 5 kids: Meredith (14), HENRY (11-DMD); Thomas (8); Jack (5); and Madeleine (2). Our Henry was diagnosed at 18 months. He is now a 6th grader. He got a power wheelchair 6 months ago and also has a service dog. Life is very busy and dynamic here in Tallahassee. I look forward to sharing stories and support.
Hi Chris, It isn't available over the counter in the US, as far as I know, but it is available online through the US. Idebenone is the generic name of Catena. Below are the links I have regarding Idebenone. Joshua is 9, weighs 57lbs, and takes 500mg. We order from Smart Powder since they offer the 500mg pill. I hope this helps.
Hi Chris, nice to meet you. I am so sorry to hear of Henry's diagnosis. Sounds like you have a wonderful family. Please know that their is more hope for Henry at this time than I have ever witnessed in my life. When my son was diagnosed, much of what is now in Clinical Trails were just dreams and theories. Nothing was in the pipeline for cures, and treatments to extend the quality of life for our boys were not known or developed. Please feel free to contact me any time if I can be of support or assistance to you and your family.
Welcome Chris! We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you and your family.
Please don't hesitate to contact us by phone, email, or message if you ever need anything -- 800-714-5437 - community@parentprojectmd.org
And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you information tailored to parents & families of boys with Duchenne, e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.
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StaffPat Furlong said…
really nice to meet you Chris. Please feel free to email me directly Pat@parentprojectmd.org
Sure -- but you probably know more than I do! My email is rickilewis54@gmail.com
Hi Chris, thank you. I am very glad to talk to u. I hope that I could share and gain experience from u in terms of taking care DMD children.
There hanging in there my older brother is hanging on and being very strong and my little brothers still mobile so that's something to be happy about my moms also being very strong with the whole situation thanks for asking hows your son doing?
Chris, Quinten is doing well. We are approaching the 7 year anniversary of Quinten's diagnoses, so life is about to get crazy busy with our annual/semi annual appointments. He has really been struggling with being board lately. He does not like to go out in the cold, and it is a lot of work to get all bundled up to go outside (not to mention trying to move around in all of those clothes). I need to post, to get some ideas. How is Henry doing?
'Yes, Chris, I hope so as well, although we all get busy with life and of course our families! Thanks, cheers'
Thank you so much!
Hi Chris, It isn't available over the counter in the US, as far as I know, but it is available online through the US. Idebenone is the generic name of Catena. Below are the links I have regarding Idebenone. Joshua is 9, weighs 57lbs, and takes 500mg. We order from Smart Powder since they offer the 500mg pill. I hope this helps.
Naomi
Hi Chris, nice to meet you. I am so sorry to hear of Henry's diagnosis. Sounds like you have a wonderful family. Please know that their is more hope for Henry at this time than I have ever witnessed in my life. When my son was diagnosed, much of what is now in Clinical Trails were just dreams and theories. Nothing was in the pipeline for cures, and treatments to extend the quality of life for our boys were not known or developed. Please feel free to contact me any time if I can be of support or assistance to you and your family.
Sincerely,
Tom
StaffPPMD said…
Welcome Chris! We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you and your family.
Please don't hesitate to contact us by phone, email, or message if you ever need anything -- 800-714-5437 - community@parentprojectmd.org
And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you information tailored to parents & families of boys with Duchenne, e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.
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