If you are interested, please join in the discussion about electrostim treatment at South Texas Innovative Medicine Discussion Forum. My daughter has RSD and went to Dr Rhodes and STIM. The "treatment" didn't work at all for her. The STS has been on the market for almost a DECADE! I'm usupicious that there's never "time" to assess the success rate data...
Hi Keith! It was great to see you and Julie on Sunday. Thanks for supporting us as we launch FACES in MI. I would like to chat sometime about the U of M clinic in Ann Arbor. I was not aware of the progress they were making to create a multi disciplinary clinic right in our back yard. With interest gaining for a clinic here in Grand Rapids I'd like to strategically talk through the pros and cons of two clinics so close. I also noted on your survey that you were interested in a greater need for advocacy in MI locally. I am looking into this and will get back to you. If you have any ideas, please let me know.
I will be sending out Deannes' notes from our meeting as soon as she has time to dictate them. We also hope to pull together a holiday party in your neck of the woods. Deanne and I would welcome ideas of where we could meet or things we could do as a group.
It is a hard road. John was diagnosed way back in 1991/1992. That seems like worlds ago. We were blessed everyday we had him. Feel free to email me anytime---. I am by no stretch of the imagination an expert but I am a Mom that lived through a son with Duchenne MD. I am writing a book about John's life. It is called "I Didn't Say It Was Easy." Many people have asked us all kinds of questions as to why we kept him at home, didn't have him in a facility, etc. We kept him home because we loved him so much and that is where we wanted him and where he wanted to be. Please don't be afraid to comment, email, or whatever. I am here to listen, and perhaps give a suggestion that you may not have thought of or heard before. I wish you all the best, your family too.
I have been reading some of the discussion on outliner (I think misspelled). I am curious about it and you seem to know alot. My son, Alex (who will be 10 one month from today) was diagnosed 5 years ago. He is missing exons 8 to 19, but I am not sure if he is inframe or out of frame. I have the DNA report that was conducted at Stanford University and the report that did my DNA test at Baylor Diagnostic Laboratory (I am not a carrier). Alex gets around very well. He still walks, run etc. I sometimes wonder if he is a mild DMD child or a severe Beckers. I don't understand alot of the lingo on this report...a little over my head.
How did you find out that your son was in-frame? Do you think if you looked at my report, you may be able to tell me more.
Thanks and have a good day.
Thanks for all the info...I enjoy reading your posts.
Hi Keith - good to see you here. Our son Nick is 14 ad we also go to U of M and see Dr. Dowling. We have been to MSU with Dr. Simpson, and I am planning on Cincinnatti in September. Nick has had Scoliosis surgery - last year and is doing well. We have a cough assist, he's not been on steroids, but is doing well. We will see the Cincinnatti doctors to determine if steroids is a good choice. Love to chat and see how your son is doing.
I noticed you were from NJ, that's where we live. Anyway, please keep me up to date on any response you get from the CDC re the swine flu/MDA Camp cancelling and what the recommendation may be for school in Sept. I'm also following on the Uncancelled MDA Camp (as well as my son) on facebook and your letter was very well written. If you need us to do anything, please let me know. Thanks. Beverly
I forgot to mention when I responded to your last email about the risk discussion that if you know anyone who is attending the conference this week, feel free to suggest they get in touch with us to learn about our study. We've lined up several interviews, but we're hoping to do quite a few more while we're in ATL.
I followed the discussion thread about the cancellation of the MDA camps. What a disappointment that must be for so many of the boys. As with research sometimes, it seems like fears about liability supercede common sense and rational judgment to drive decision making. I know that families look forward to camp all year, and it's sad to think that boys will miss it this year.
Hope to have the chance to talk to you at the Jersey shore later this summer. Take care.
Keith, I believe his stop or the peroid is too soon ie on exon 5 and thus doen't produce dystrophin. Several years ago Eric Hoffman the bench scientist who discoverd the dystophin gene told us that it would be molecler gymnastics to have a stop on exon 5 and produce dystrophin. If you have a muscle biopsy be sure to have them quantify the amount of dystrophin if they find it.
Thanks for the plug, Keith. We've been thinking about your feedback from the past group and considering some kind of hybrid where we allow people to contribute to the discussion at their convenience, as was the case with your group, but also incorporate some type of real time conference call or other mechanism for generating greater interaction among the participants.