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Pre-clinical treatments for Lafora disease - a childhood dementia driven by perturbed metabolism 

Childhood Dementia Initiative
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Professor Matthew Gentry from the University of Kentucky gives a presentation at the inaugural Challenging Childhood Dementia Symposium in March 2022. He describes the collaborative effort by the Lafora Epilepsy Cure Initiative consortium to understand Lafora disease and develop therapies. His talk focuses on the antibody-enzyme fusion (VAL-0417) which has been successfully tested in a disease model.

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13 авг 2024

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Комментарии : 10   
@prakashhr4379
@prakashhr4379 2 года назад
Thank you all for your work. My son is also been diagnosed with lafora bodies (EPM2A). He is already in his 6 years of onset. Please let me know how and who to contact to get help. I do note this video is 3 months ago. If there are any human clinical studies going on/done that would add life to our living today. Hope I get some leads to know whom to contact and also any information that helps in moving towards his cure. Thank you for all help in advance. - Prakash
@childhooddementiainitiativ4040
@childhooddementiainitiativ4040 2 года назад
Hi Prakash. We're sorry to hear about your son. We recommend contacting Chelsea's Hope Lafora Children's Research Fund. They are a USA-based organisation for Lafora and should have information on this.
@MaruGujaratofficial
@MaruGujaratofficial 2 года назад
Where are you from Prakash?
@nadeemhussain1895
@nadeemhussain1895 Год назад
My Son age 22 year Have a PME epilipsy 6 year But not Control with Medicine Plz Help Us what to do
@johntworm9960
@johntworm9960 2 года назад
Thank you for all the work you are doing. Our son is 17 was diagnosed with LAFORA a year ago. How can we, if possible, get him into a clinical trial with you? We live in Colorado
@childhooddementiainitiativ4040
@childhooddementiainitiativ4040 2 года назад
Hi John, thanks for you message, have you connected with Chelsea's Hope Lafora Children's Research Fund - they are the USA based organisation for Lafora and should have all of the information on this. Best of luck - the team @ChildhoodDementiaInitiative
@MaruGujaratofficial
@MaruGujaratofficial 2 года назад
my niece have Progressive myoclonic epilepsy, Is there any cure? Please help us... Pls reply
@childhooddementiainitiativ4040
@childhooddementiainitiativ4040 2 года назад
Hi Maru, thanks for your message. Sorry to hear about your niece's diagnosis. Your treating team will have the best answers on what is available for your family. Wishing you the best for the next steps - the team @ChildhoodDementiaInitiative
@MaruGujaratofficial
@MaruGujaratofficial 2 года назад
she dignosed with lafora disease, I want to know, is there any cure or clinical test going on? Any medicine invented? please answer
@childhooddementiainitiativ4040
@childhooddementiainitiativ4040 2 года назад
@@MaruGujaratofficial Hi Maru, thanks for you message, have you connected with Chelsea's Hope Lafora Children's Research Fund - they are the USA based organisation for Lafora and should have all of the information on this. Best of luck - the team @ChildhoodDementiaInitiative
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