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DMD/BMD Siblings

Siblings of those who have DMD or BMD.

Members: 38
Latest Activity: Jun 22

Discussions

Brian

Started by Jessica Moore. Last reply by Michael Marandino Sep 7, 2012. 2 Replies

DMD Sibling Study

Started by Laura Hermann Jan 17, 2011. 0 Replies

Sibling Rivalry

Started by Jane Belland Karwoski. Last reply by Jane Belland Karwoski Aug 19, 2010. 3 Replies

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Comment by Jane Belland Karwoski on February 22, 2012 at 6:55pm

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.

Jane  (MyBlueGenome.org)

Comment by Brooke Wagoner on February 22, 2012 at 5:00pm

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!

Comment by Laura Hermann on March 14, 2011 at 11:05pm

Hello, I'm Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done online. If you choose to participate in the study you will complete a three questions survey.
http://www.surveymonkey.com/s/339CR8K

Comment by Jane Belland Karwoski on March 7, 2011 at 10:35pm

Hi Laura,

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.

Jane

Comment by Laura Hermann on March 7, 2011 at 8:07pm

Hello, I'm Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done online. If you choose to participate in the study you will complete a three questions survey.
http://www.surveymonkey.com/s/339CR8K

Comment by Laura Hermann on February 28, 2011 at 11:16pm

Hello, I'm Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done online. If you choose to participate in the study you will complete a three questions survey.
http://www.surveymonkey.com/s/339CR8K

Comment by Laura Hermann on February 22, 2011 at 7:48am

Hello, I'm Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done online. If you choose to participate in the study you will complete a three questions survey.
http://www.surveymonkey.com/s/339CR8K

Comment by Laura Hermann on February 14, 2011 at 9:57pm
Hello, I'm Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done online. If you choose to participate in the study you will complete a three questions survey.
http://www.surveymonkey.com/s/339CR8K
Comment by Laura Hermann on February 7, 2011 at 10:36pm

Hello, I'm Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done online. If you choose to participate in the study you will complete a three questions survey.
http://www.surveymonkey.com/s/339CR8K

Comment by Laura Hermann on January 31, 2011 at 5:03pm

Hello, I'm Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done online. If you choose to participate in the study you will complete a three questions survey.
http://www.surveymonkey.com/s/339CR8K

 

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