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Hello friend and thank you for sharing your story. I studied business but was not diagnosed until my early 30s after my progression stated to excel more rapidly. I have two degrees but not able to use them because my hands and fingers curl inwards and dont function enough to work. I've been pending help from social security for two years come January 2025. I have no income and single mom. My son just turned 18 years old, and I lost my medicaid insurance because of it. The only way I can get it back is if I get disability approved by ssd, or if I have another baby- that I would not be about to care for safely. I've had a lawyer from the start, but they say they can't do anything to push ssd to process any faster and they can deny 3 times befit it would go to court. Given that it's already taken nearly 2 years for a response from sdi, in looking at possible 6 years more time before I can get any help with medical, housing, etc. I worked for 18 years at my last job mostly at a desk typing but lost my job because of my hands and fingers cannot keep up. Lost my apartment. Been living in different places, pretty much homeless but again can't get any help without sdi approval. I'm also suppose to report progressive changes to sdi, but with no insurance haven't been able to see doctor for 7 months now. Do you know of any assistance or help programs for people going through this? Your story is spot on and I feel you understand and can articulate social concepts we go through that are difficult for us to convey to others about what we go through. Being bullied for falling and losing the game. My son went through similar scenerio playing baseball, and everyday refused to play sports altogether. Please friend me on Facebook. If like to follow you. Thank you for your time and dedication. It is so important.

I’ve got your back Rob ❤

Rob❤

Great 👍 May God give us strength and peace

I have CMT. I am 42 years old .I am not any treatments and diagnosis yet.

I have CMT 1A I am from Nepal 🇳🇵🇳🇵

I Have CMT1A , From New Zealand

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

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 .

No mention of CMT4? Great description of how the transcription process takes RNA to Protein status.

I wish these trials were offered in Canada

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 .

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 ?

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.

can gene therapy stop the progression of cmt?😂

What a Inspiring story ❤ , Thanks u Peter uncle One day I also hope that I will also contribute to this association 😊

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.

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!

Beautifully made

I have Cmt1e too. Stay strong queen

Many people are suffer by this disease.

Thanks

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

Thanks

Thanks

Thanks

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.

Wow, what a nice motivation 👏 🎉

Proud of your efforts 👌 Please keep going. You are changing peoples lives ❤

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!!

Many thanks for sharing 👍I hope to make it to the 2024 Convention.

Thank you for your effort.. Appreciated.

I am looking forward to watch the meeting videos of September 22 23 2023. All our support keep 🙏 going ❤

Amitriptyline 150 mg,3600 MG gabapentine,8mg ramelteon helps my cmt severe neuropathic pain in my feet.

Thank you

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

When will clinical trials begin in USA?

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.

Severe severe burning pain!

My feet feel like they are on fire 🔥 I am considering amputating my feet to alleviate the 10/10 torturous severe pain!

I have cmt1a. The feet burning agonizing pain at night is 10000 worse than the weakness.

This is great news, so sad this video only has 40 views.

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!

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.

Thank you. Lets find a cure. I'm so tired of hurting.

0:26 dating-near.online

amazing progress i 12 months

Amazing work, CMTRF

A big Thank you