Ren
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Here is a link regarding this drug: https://www.parentprojectmd.org/edgewise-therapeutics-announces-positive-topline-results-from-the-edg-5506-phase-1b-clinical-trial-in-adults-with-becker-muscular-dystrophy/
Phase 2 starts in a few months. Are you interested to participate? As Becker patients feel normal when they start in life, they stay in an isolated position in terms of advocacy. Basically, no group behavior unlike patients with Duchenne.
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Hello,
I stumbled by chance on Andy Rusch. It is extremely rare to find a Becker MD voice on the net. Much rarer than Duchenne MD, although the proportion could reach a third of the Duchenne population. A paradoxical problem with Becker, is that it can’t be seen to observers until adulthood and this is partially what this story is about.
I think this issue eats up Becker MD people, because they have constantly to justify about their status which is not understood. An issue which exists also within the patient organizations where they aren’t as stricken as Duchenne patients. I recall a person who asked why I was requesting research about this illness. Because here comes the saddest fact: Becker are overlooked in this area too, although it seems an easier illness to fix than Duchenne, as it occurs at a later age.
Thanks for these articles!
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I am so sorry to read this. Unfortunately, I am a father of a Becker child, I am not afflicted myself. I wish I could help you in a way or another. What kind of mutation has he? There is more variability than with Duchenne.
My boy has a great sense of humour too, but he is ADHD also. He is not adolescent yet and is ambulatory. I hope your son is OK regarding the heart, as this is a risk with BMD. Recent papers have found that ACE drugs are even better when taken before the heart shows issues.
Did you check your heart too? Often mothers of BMD children are at risk also, as they harbor the mutation even though they have a second gene which is fine. Here is the only site of a BMD person I am aware of: my-beckers-story.blogspot.com.
This person is living in Ontario, and has a FB page which could act as a sort of clearing house. I hope this helps you to find a closer relationship for your son! Have a great week-end.