RIP the 2 boys who have died after taking fordadistrogene movaparvovec. Thank you all parents, children and researchers for trying.

I'm 43 years old with Becker which is very similar it's crazy I've never heard of this till now

@ricardo1e93

Ай бұрын

Hello, same here but soon 31. I mean kinda same, I knew doctors in France were conducting research with cientists in USA. I'm glad they came to a breaktrought.

What a great loving doctor

When this will be available in India????

Magnificent

So what’s the name of the medicine? When is it available?

Great ❤

apakah viltepso bisa mengobati DMD? tolong saya,,dimana saya bisa mendapatkan obat tersebut? saya dari indonesia

🙏🏻

🙏🙏🙏🙏🙏

My son is suffering DMD IS ANYBODAY CAN HELP US😢

Please I need help. I just heard about this disease today. My little nephew was diagnosed of this strange disease 3 weeks ago. I'm a Nigerian.

Can keystone first cover it for my kid 5 years i need answers please

When this will be available in India? I am 17 year old and i am suffering from dmd😢

Can this be used for adult patients with OPMD?

I went there 15 years ago for treatment when I heard about a new steroid treatment. They refused to prescribe it to me.

I reside in India. How can I avail this treatment? Someone please respond.

My son has been suffering from this disease for 9 years please inform us it will be coming to India.

My son 7years old DMD problem help me sir

My only son is also suffering from this disease . If anyone can help me and tell the way forward please.

@amberhall9937

6 ай бұрын

Your son's neurologist should be able to help you pursue this.

@amberhall9937

6 ай бұрын

If you don't have a good neurologist who is helping you, I am copying and pasting the reply I gave someone else. I sympathize with you, I have done a lot of detective work myself, because the doctors where I live weren't guiding me at all. My mom has myotonic dystrophy 1, which is a form of muscular dystrophy. I did an internet search of "myotonic dystrophy doctors," and found a wonderful neurologist who specializes particularly in that variation of the disease. His name is Dr. Subramony and he both treats and does extensive research of myotonic dystrophy. There is no treatment of Myotonic Dystrophy on the market, but mom has been able to participate in clinical trials. I do think she has been helped. I have to travel to UF Health (associated with the University of Florida). I live in Alabama, so I'm able to make the drive in 4 to 5 hours. I am not an expert on other forms of muscular dystrophy, but I would recommend you begin searching the internet. You can narrow your search to look for doctors in whichever state you are able to travel to. You'll have to do a lot studying, but I think you will find something of use, because it sounds like the treatment of DMD is further along than what exists for myotonic. If your son has a neurologist, you may want to ask that doctor. I don't know what doctors are like where you are, but my mom's doctors were of no help. I dug up all the information on my own and then contacted UF Health Neurology myself. They answered all my questions and helped me get mom with a neurologist that has devoted most of his life to helping people specifically like my mom. I would advise you to do something similar. Don't get discouraged if your local doctors are not knowledgeable. I find that I have to do the job of a lot of mom's local doctors for them. If you face a similar situation, you can decide who you want to pursue for your son, and get the local doctor to give you a referral. You might also look at clinicaltrials.gov. There may be more emerging treatments for DMD. Often the drug companies doing the study will pay all or some of the expenses associated with traveling to be a participant. I wish your family the best. I pray this response will be of help to you and others who read it. -Amber

It will come to india

when this will be available in Pakistan???

Hope my niece will cure with this medicine

@Serenoj69

Жыл бұрын

It is no cure. It charges the course of the diverse. Into becker but New muscle fibres that are formed Will not be projecten. The best outcome could be buying time for much beter options in the next few years.

My Son age 10 years, eligible for exon 53 skipping. We Need guidance .

@amberhall9937

6 ай бұрын

I'm sorry to hear your son has DMD. You're most likely going to have to do some detective work in order for your son to have the best outcome. I will copy and paste my reply to another commenter. I hope it gives you some ideas. My mom has myotonic dystrophy 1, which is a form of muscular dystrophy. I did an internet search of "myotonic dystrophy doctors," and found a wonderful neurologist who specializes particularly in that variation of the disease. His name is Dr. Subramony and he both treats and does extensive research of myotonic dystrophy. There is no treatment of Myotonic Dystrophy on the market, but mom has been able to participate in clinical trials. I do think she has been helped. I have to travel to UF Health (associated with the University of Florida). I live in Alabama, so I'm able to make the drive in 4 to 5 hours. I am not an expert on other forms of muscular dystrophy, but I would recommend you begin searching the internet. You can narrow your search to look for doctors in whichever state you are able to travel to. You'll have to do a lot studying, but I think you will find something of use, because it sounds like the treatment of DMD is further along than what exists for myotonic. If your son has a neurologist, you may want to ask that doctor. I don't know what doctors are like where you are, but my mom's doctors were of no help. I dug up all the information on my own and then contacted UF Health Neurology myself. They answered all my questions and helped me get mom with a neurologist that has devoted most of his life to helping people specifically like my mom. I would advise you to do something similar. Don't get discouraged if your local doctors are not knowledgeable. I find that I have to do the job of a lot of mom's local doctors for them. If you face a similar situation, you can decide who you want to pursue for your son, and get the local doctor to give you a referral. You might also look at clinicaltrials.gov. There may be more emerging treatments for DMD. Often the drug companies doing the study will pay all or some of the expenses associated with traveling to be a participant. I wish your family the best. I pray this response will be of help to you and others who read it. -Amber

Is there anyway that carbon nano particles could carry a small dystrophy protein over entire body.

How is this working is it carried by carbon fiber oh by a virus

How about adult who can t walk ! It work !

😢👨‍🦼💚

Is there anyway that carbon nano particles could carry a small dystrophy protein over entire body.