Love seeing hope for our kids! We need to continue with ongoing research because there are many kids in the approved age range like my son that have been disqualified for this treatment due to pre-existing antibodies. Research needs to continue so we may overcome these obstacles with using AAV gene therapies. We also need to support more research so ALL kids with DMD have the opportunity to change the natural history of this horrible disease. Ongoing research + financial support = CURE!
From Philippines.. My kid diagnosed DMD at the age of 4 He is now 13 yrs old. I was hoping to find cure to my kid and to all other patient who suffered this kind of disease at the very young age.
Well...."you are so lucky to live here"...If you are in Europe you do not have to battle anything to get things covered. Everybody is covered in every nation. So if this treatment is accepted in Europe, the fight about the price is with the government. Then the insurance must give it to your kid. No extra costs, nothing. Suppose you have a kid and you cannot get it covered for that kid, how lucky are you? The US has loads of money, but seems to find it very difficult to give everyone a fair share.
3.2 million for the therapy....or a lot more on life time care....hmmm....i could see private insurance balking as they don't pay for the nursing care, but there should be special medicaid waivers for things like this.
Yes, I agree. All children deserve a chance. But what about us the older people With it You guys don’t think about us I have struggled a long. Journey. In this life. With lots of opticals. What about me and other people? Do we just not matter Because we are adults I guess we don’t
My son age 3 he affect DMD (14 exon 30- 43 is duplicate or deletion in genetic report ) which treatment is suitable for my son please ....share me. I am in India (Tamil Nadu chengalpattu) in the surrounding there is no treatment to say and only issue striod tablets my baby used this striod tablet now so please...... Share me for suitable treatment for my baby genetic report
I am not a doctor but if it is exon 30-43 skipped I think he could use Elevidys. Check it out, it is quite easy to find out. I do not know about your healthcare system though. The costs are 3,2 million dollars. Pretty absurd and while I do not know the details, I do know how BigPharma works in general.
America. Richest in the wotld. Best nedication. Awful healthcare, no compassion. In Europe this will be covered and will cost you zero euro. Society, we all togethet, cover eachother.
But America is the country where most of the research is happening.. So there is something that is right. I hope every child and adult going through this gets the medication..
Love seeing hope for our kids! We need to continue with ongoing research because there are many kids in the approved age range like my son that have been disqualified for this treatment due to pre-existing antibodies. Research needs to continue so we may overcome these obstacles with using AAV gene therapies. We also need to support more research so ALL kids with DMD have the opportunity to change the natural history of this horrible disease. Ongoing research + financial support = CURE!
So Many DMD patient are also in an india, kindly support them for treatment
I have three boys with duchennes and this is so hopeful!
God bless their little souls 🙏🏽
Did you get any treatment?
FDA approved it for older boys.
God Bless you Terry Campbell. Died 1962 age 12 Muscular Dystrophy.
I'm happy for him. Hope all patients can get this.
as a person with the same dystrophy, this gives me hope.
I hope its for kids older then 5
MY Son is Suffering from DMD from 3 years.
From Philippines..
My kid diagnosed DMD at the age of 4
He is now 13 yrs old. I was hoping to find cure to my kid and to all other patient who suffered this kind of disease at the very young age.
Thank you Jesus🙏🙏🙏
Not say thank you Jesus say thanks God better God is the best God created Jesus
@@candist And he created Duchenne. That is just wonderful isn't it...
Well...."you are so lucky to live here"...If you are in Europe you do not have to battle anything to get things covered. Everybody is covered in every nation. So if this treatment is accepted in Europe, the fight about the price is with the government. Then the insurance must give it to your kid. No extra costs, nothing. Suppose you have a kid and you cannot get it covered for that kid, how lucky are you? The US has loads of money, but seems to find it very difficult to give everyone a fair share.
3.2 million for the therapy....or a lot more on life time care....hmmm....i could see private insurance balking as they don't pay for the nursing care, but there should be special medicaid waivers for things like this.
There has been me and my two brothers with Duchenne muscular dystrophy but unfortunately, my two brothers had passed away from this disease
Fingers crossed!
I'm suffering from DMD from 10 years 😢😢
I believe I’m still here Because of God But I don’t care what anybody thinks about my belief because I know in my heart God is why am here.
Hope for the best 👍
Good now lgmd2a treatement
my son is 9 years old he is Muscular dystrophy patient
❤❤From Nepal My Son 7 years Old He Also DMD Pesent😢😢
Would like to know if it would work for adults with OPMD?
Yes, I agree. All children deserve a chance. But what about us the older people With it You guys don’t think about us I have struggled a long. Journey. In this life. With lots of opticals. What about me and other people? Do we just not matter Because we are adults I guess we don’t
hi I'm asraful
From Bangladesh
My baby age 8. Attack from DMD dieses.I want to get my son treated,How can we treat
it? Where is your hospital?
Good news
I have muscle dystrophy put I don’t have money to pay bills 😢😢
From india my baby 14 years LGMD type 2e pesant
Can you halep me same problem
My son 9years boy .dmd problem
My2 son muscular dystrophy pashint in need help
My son age 3 he affect DMD (14 exon 30- 43 is duplicate or deletion in genetic report ) which treatment is suitable for my son please ....share me.
I am in India (Tamil Nadu chengalpattu) in the surrounding there is no treatment to say and only issue striod tablets my baby used this striod tablet now so please...... Share me for suitable treatment for my baby genetic report
I am not a doctor but if it is exon 30-43 skipped I think he could use Elevidys. Check it out, it is quite easy to find out. I do not know about your healthcare system though. The costs are 3,2 million dollars. Pretty absurd and while I do not know the details, I do know how BigPharma works in general.
போன் number plz share
Phone number please
Is it pissible to treat the DMD Patiebt at the of 15 years?
America. Richest in the wotld. Best nedication. Awful healthcare, no compassion. In Europe this will be covered and will cost you zero euro. Society, we all togethet, cover eachother.
But America is the country where most of the research is happening.. So there is something that is right. I hope every child and adult going through this gets the medication..
Aman Bangladesh