STAR, Charcot-Marie-Tooth disease -related research

There is currently no cure for Charcot-Marie-Tooth (CMT), a progressive neuromuscular disorder that affects an estimated 2.6 million people, causing them to live with limited ability and mobility, as well as deformities and frequent pain.

But now, more than at any previous time in the history of CMT research, hoped-for treatments and cures have an excellent chance of becoming a reality.

With your help, the Strategy to Accelerate Research (STAR) will build upon recent breakthroughs in genetics and dramatically speed up the pace of CMT research.

Donate today and support the ambition of a world with out CMT!:

https://secure.charcot-marie-tooth.org/Donate_STAR.php

Category:

Science & Technology

Tags:

• CMT
• Charcot-Marie-Tooth
• Charcot
• Marie
• Tooth
• STAR
• star
• CMTA

[WULF2125]

Hello everyone! I would like to inform you that I have CMT type 1 my self and that was why i posted this video. From the looks of it there are many of us here on youtube and therefore I urge every single one of you to check out the link and the STAR-program and consider donating a few bucks. I have donated 25$ my self and I will continue to do so each year until a cure is found. This disease CAN be cured and I urge all of you to act in that belief as well. Also check out CMTA for more info.

[Unlocalist]

don't worry guys, I have CMT and am confident i'll get accepted for a neuroscience/biomedical degree at manchester

i'll soon cure us all :)

[tickyul]

She is right about hardly anyone knowing about the disease......especially your basic know nothing General Practitioner. I question whether the average General Practitioner even knows what the Periphiral Nervous System is, the blank, dull stare I get from a GP when I tell them I have a hereditary form of periphiral neuropathy.

[jennyloveslenny]

i just hope one day they will find a cure

[tickyul]

@mkmary5555 Did you have the tests done? I would imagine that a well versed Neurologist could easily do a EMG/NCV around the diaphragm area. I have Cmt1a, I am pretty sure my Phrenic Nerve has been effected. When I exercise too hard it feels harder to breath for a couple of days, the diaphragm area feels heavy and weak.

[mkmary5555]

Tonight I was told they still aren’t sure what test they will be running until they talk to a pulmonary doctor tomorrow. Do you have any suggestions?

I know of 4 other people passing away from CMT because of the deterioration of the peripheral nerves around their phrenic nerve, which deteriorated their diaphragm… and dying without any secondary conditions.

If anyone has any suggestions please feel free to email me at ilovewater333@gmail.com Prayers are great too! -)

[mkmary5555]

In 1996 and 2004 I went to a sleep lab to change my bi-pap settings.Tomorrow,  Oct 4, 2010 I go into another sleep lab. My symptoms are: I can’t lie down without going into a panting type breathe, tremors, and feelings like I’m suffocating. This has been going on for about two years.

[mkmary5555]

In 1995 I was diagnosed with the deterioration of the peripheral nerves around my phrenic nerve, which was deteriorating my diaphragm. Once they found out I also had the same problems, as my sister, they put me on a bi-pap to hopefully slow down the progression of my nerves deteriorating. It may have, but not stop the progression caused by CMT.

[mkmary5555]

To the Doctor, Because of the deterioration of the peripheral nerves around my sister’s phrenic nerve, which were deteriorating her diaphragm. In the mid 90’s my sister ended up in ICU from CMT-1A She was put on a trach for 9 years. In 2004 my sister died, at the age of 56… without any secondary conditions.

[genluxuria]

Friends with Charcot Marie Tooth on facebook

This page was created for everybody with Charcot Marie Tooth who wants to shear their own experiences and wants advice on how to deal with this condition.

To found the page make a search on facebook, amigos con charcot marie tooth.

[khsbangash]

My daughter (with age of 6 years) has this disease as well. I am confident that STAR will discover a cure for this disease.

[tickyul]

I got diagnosed with Cmt1a at age 40. It all became clear, why even the fat kid would beat me in sprints, why I lost 25 lbs of muscle in bootcamp (even though I was eating 5-8 thousand calories a day), why, when I have been lifing weight since I was a kid, I never got strong. Cmt is supposed to be the most common form of PN, but most doctors I have talked to have never heard of it (except neurologists). Demylation of the PNS has a lot of implications beyond just effecting the arms and legs.