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Exon 44 Deletion

I have just received the genetic results for Preston. They have found that he is missing Exon 44. I have been doing some research regarding…

Started by Geraldine Coolidge

23 Feb 13
Reply by Sai Chand. Gurujala

Nicotinamide riboside

I read a lot lately about vitamin Nicotinamide riboside and I was wondering if anyone ever tried this on  child , and in what doses? Here…

Started by Sanja Kogelnik

18 Feb 10
Reply by Sanja Kogelnik

Exon Duplications of 2 to 4

I request you to please help us. My nephew is diagnosed with DMD in 2016.His age is 7.5 years. Hemizygous Duplication of Exons 2 - 4. MLPA…

Started by Sai Chand. Gurujala

0 Feb 10


Does anybody have experiences in Fibrogen FG-3019 study? If has, please share!!!!

Started by Rados Ágnes

0 Jan 23

Lisinopril heart medication

Just wanted some advice on lisinopril

Started by anna ndiaye

1 Jan 23
Reply by Rahul Deshpande

Relocating to Nashville

Hello, We will be relocating to Nashville. We have a 16 year old with DMD and would like to connect with other DMD families in the area. W…

Started by ana das

2 Jan 12
Reply by ana das


Hi all,  we are in the process of renovating our bathroom to make it more accessible for my son.  We have limited space so we cannot make i…

Started by MaryEllen Sicoli

2 Dec 23, 2016
Reply by Gretchen McPherson

Extra Large Bowel Movements, but not exactly Constipation

I have a question:  As long as we can remember, our son has had LARGE BMs - large enough to clog the loo on occasion. We have never used Mi…

Started by irishgirl

0 Nov 24, 2016

homecare beds/mattress

Hi, does anyone have a lateral rotation mattress to recommend, such as MA95Z or other mattress? How about a bed then? We are familiar with…

Started by Sharon Wood

1 Nov 23, 2016
Reply by Michelle Scaglione

Use of creatinine for DMD

Good night I have a child with DMD, consult any of you take creatinine, and if it worked for you.

Started by Eddy Rivera

0 Nov 8, 2016


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