I have CMT. I am 42 years old .I am not any treatments and diagnosis yet.
@aashrinavlog2 күн бұрын
I have CMT 1A I am from Nepal 🇳🇵🇳🇵
@simonjohnson22722 күн бұрын
I Have CMT1A , From New Zealand
@gangaramjatrajolakallan149Ай бұрын
I am 24 yr male from india i suffer from last 8 yr this disease (cmt) , gene therapy is possible for treat it then i want treatment . What is the cost of gene therapy for cmt
@MilanGaži-y7yАй бұрын
Hello i from Slovakia and have a question for u my aunt have 14 years and doctors diagnoze him CMT4G type RUSSE at 6 years thay make the generic tests . My question is if this medication Can help him . And second question is how the illnes will continue i want to know if it is posible he Can end Up on wheelchair . Thanks for every information .
@AB1Vampire2 ай бұрын
No mention of CMT4? Great description of how the transcription process takes RNA to Protein status.
@twistnbend4jewlz2 ай бұрын
I wish these trials were offered in Canada
@idakingsnorth11902 ай бұрын
You walk so much better than I and you don’t have AFOS. I’m 65 and I’m finding it more challenging this last year .
@MdAlif-j7l3 ай бұрын
How much time it will take I am I am hearing it from the age of 15 and now I am 21 can you please tell me ?
@cmtresearchfoundation2 ай бұрын
Determining how long a drug development program will take to become an approved drug is challenging because each program is unique and it's unpredictable if a drug will meet the necessary milestones for approval. CMTRF currently has 5 CMT projects that have resulted in drug candidates that are now moving towards clinical trials and we aim to continue to fund more projects to increase the chances of getting approved treatments for CMT. If you would like to stay updated on the progress of these projects, please visit cmtrf.org/ and sign up for our email mailing list.
@MdAlif-j7l3 ай бұрын
Dear, I am 21 year aged I am hearing form the age of 15 please do something because I can see how my life is ruin after few year I will be unable to walk.
@ShuvamDadal3 ай бұрын
can gene therapy stop the progression of cmt?😂
@cmtresearchfoundation2 ай бұрын
Genetic medicines have the potential to stop or even reverse the progression of diseases because they target the underlying genetic cause. This makes them promising therapeutic approaches to explore for CMT. As of today, CMTRF has funded 11 projects that explore various genetic technologies for CMT. To date, these projects have resulted in 3 genetic-based drug candidates that are now moving forward towards human clinical trials. For more information on genetic medicines and to stay up to date on all the CMT genetic-based therapy projects we fund, please visit cmtrf.org/gene-therapy/
@vinitthakur61684 ай бұрын
What a Inspiring story ❤ , Thanks u Peter uncle One day I also hope that I will also contribute to this association 😊
@sivaprathipati77834 ай бұрын
I am from India my son is suffering with CMT1A, age present 7 yeas. when can i expect durg for CMT please let me know.
@michaelglenn54594 ай бұрын
Peter, a very Inspiring and Courageous story! I didn't have any idea about your CMT. But your video has certainly increased my respect for you and my awareness of CMT. Blessings & Best Wishes!
@pr1ce2134 ай бұрын
Beautifully made
@gelilatesfaye23414 ай бұрын
I have Cmt1e too. Stay strong queen
@ShuvamDadal5 ай бұрын
Many people are suffer by this disease.
@gamaltaher97146 ай бұрын
Thanks
@Amine.817 ай бұрын
Thank you so much for answering my question regarding my 9 years old daughter. I'm glad to get in touch with you. Appreciate your cooperation
@gamaltaher97148 ай бұрын
Thanks
@gamaltaher97148 ай бұрын
Thanks
@gamaltaher97148 ай бұрын
Thanks
@DrDenham9 ай бұрын
I am a physician with CMT2A. I am 47. I have lost a lot of strength in the last two years. What type of results could individuals with advanced symptoms expect to see once treatments are available (i.e. will our muscles be able to regrow, will it just stop further atrophy, will we wear be able to stop wearing braces?) There is little talk of what is possible after treatments are available.
@Amine.8110 ай бұрын
Wow, what a nice motivation 👏 🎉
@Amine.8110 ай бұрын
Proud of your efforts 👌 Please keep going. You are changing peoples lives ❤
@Sunshine-jk9jq11 ай бұрын
I have learned more from your video than any CMT or MD charity in the UK. Well done. My symptoms manifested at 6 months of age and now at 69 I am facing using a wheelchair permanently and no known treatment to help in decades!!
@Fintan23754 Жыл бұрын
Many thanks for sharing 👍I hope to make it to the 2024 Convention.
@Amine.81 Жыл бұрын
Thank you for your effort.. Appreciated.
@Amine.81 Жыл бұрын
I am looking forward to watch the meeting videos of September 22 23 2023. All our support keep 🙏 going ❤
@God_is_my_savior-316 Жыл бұрын
Amitriptyline 150 mg,3600 MG gabapentine,8mg ramelteon helps my cmt severe neuropathic pain in my feet.
@lainieh4928 Жыл бұрын
Thank you
@simonjohnson2272 Жыл бұрын
Hi Lily, Well done to you for being able to talk about this, My name is Simon Johnson aged 50 that also have CMT so I fully understand what you are going though and about to . The hardest thing for me is people not understanding , But I had to find a happy place which I have just only found. I have a wife and 3 amazing Kids and a Grandson so you can still can enjoy life . one of the best things for myself was reaching to the CMT community about a year or 2 ago . Every day just keep smiling and keep doing what you are doing because you are helping people in what you are doing, you have helped me today just listening to your Conversation with Susan and thank also to Susan. lots of love from New Zealand
@lilysander665 Жыл бұрын
❤
@Donnamg1002 жыл бұрын
When will clinical trials begin in USA?
@cmtresearchfoundation2 жыл бұрын
Hello! Please follow along our research updates at cmtrf.org/research-we-fund and subscribe to our newsletter to always be informed cmtrf.org/subscribe
@Hesam00002 жыл бұрын
Ofcourse the NIH Clinic of Maryland has already cured or found a cure for genetic disease like CMT by repairing the bad Chromosome in the Gene.
@God_is_my_savior-3162 жыл бұрын
Severe severe burning pain!
@God_is_my_savior-3162 жыл бұрын
My feet feel like they are on fire 🔥 I am considering amputating my feet to alleviate the 10/10 torturous severe pain!
@God_is_my_savior-3162 жыл бұрын
I have cmt1a. The feet burning agonizing pain at night is 10000 worse than the weakness.
@ramazan98572 жыл бұрын
When will remyelination therapy be released?
@cmtresearchfoundation2 жыл бұрын
Hello! Please follow along our research updates at cmtrf.org/research-we-fund and subscribe to our newsletter to always be informed cmtrf.org/subscribe
@bluefatherj2 жыл бұрын
This is great news, so sad this video only has 40 views.
@cmtresearchfoundation2 жыл бұрын
We are glad to share the news with you. Please share amongst your circle and social to help bring awareness. Thank you for watching!
@rebelinaction22602 жыл бұрын
Hi there, how did you set up the Town Hall with Dr Peter Marks? I am active within my community and have received some queries here that I can’t answer with authority. Please can somebody assist me in setting one up? I think my community would greatly benefit from hearing from Dr Marks answer queries directly!
@cmtresearchfoundation2 жыл бұрын
Hello! This was a video call with Dr. Marks and the CMTRF, not a town hall. Unfortunately, we cannot help with scheduling a meeting with Dr. Marks. If you have questions about CMT, please feel free to email us at [email protected]
@Sunshine-jk9jq3 жыл бұрын
Excellent video. I have had advanced CMT 1a since birth and after 66 years this video helps me to understand yet more about my condition.
@russelllash80444 жыл бұрын
Thank you. Lets find a cure. I'm so tired of hurting.