Siblings of those who have DMD or BMD.
Latest Activity: Jun 22, 2017
Started by Jessica Moore. Last reply by Michael M Sep 7, 2012.
Started by Laura Hermann Jan 17, 2011.
Started by Jane Belland Karwoski. Last reply by Jane Belland Karwoski Aug 19, 2010.
Hi Brooke, Welcome. One thing you could do is determine what best practices are for him at this point by searching the PPMD sites. It would be easier for your mom and step-dad to respond positively to some specifics than to a general "Do something!" Don't underestimate what you can do yourself, too, even if you have to keep a low profile. Also, at 15 your brother can take some initiative if you pass on to him what you learn. The two of you can form an awesome alliance and between you manage his proactive care.
Hello al! My name is Brooke and I have 15 year old brother with BMD. He was diagnosed inutero and is showing some slight signs. My parents are very fearful of treatments and I could really use all the support I can get. I want the best for my awesome little brother!
Are you limited to the U.S.? Wales has a great program--they are in touch with ALL the families with Duchenne in the country. Small country of course, but I bet you would get as many participants there as many larger populations. I assume your IRB approval affects who you can ask, but you could submit an addendum. If interested, send me a message and we can look into it.
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