Everyone Has a Story
Everyone has a different narrative. Some realized early on they are different from the rest of the kids, running and writing in class came with many difficulties, but never understood why. Some were lucky to live long years with no symptoms, raised a family and developed a successful career. Only later they experienced difficulties in walking, deteriorating quickly.
Long Years of Fear, Searches and Despair…
No matter how the patient’s journey began, the disease leads to continuous searching, fear and despair. Years of wandering from one physician to another, numerous medical exams, only to realize the medical field is lacking knowledge and is quite helpless in these cases. During this period the physical condition is constantly worsening: Leg and hand functioning, weakened sensation, with no one who could determine how far it would reach.
Finally – The Disease Has a Name: CMT
Only after prolonged searching, the long-awaited, correct diagnosis finally arrived: Charcot-Marie-Tooth Disease, and in short – CMT. It is a genetic neurological progressive disease inducing peripheral neurologic system disruption, therefore causing a loss of function of the feet, upper legs, hands and arms.
CMT Types – the disease subdivides into over 100 different types, and the extent of severity varies from one person to another. Many parents find out they are ill during pregnancy while undergoing an amniocentesis examination. In fact, it could happen to anyone – statistics are 1 out of 2,500, a much higher probability than ALS, for instance.
We act in different paths to provide patients and family members accessible assistance in different fields,
and the ability to significantly improve their quality of life:
Movement therapy
sports practice with professional guidance, occupational therapy, physiotherapy, hydrotherapy, etc.
Auxiliary tools
for aid while walking and for hand function – fine motor skills, AFO, adjusted shoes.
Orthopedic surgery
for the repair of arm and leg distortions.
A powerful, supportive community
meetings, conventions and online lectures.
Psychological aid
support groups and professional assistance.
The CMT Association was established in 2018 by persons suffering from the disease; patients and their family members.
The CMT Association holds 3 main goals:
- Raise – awareness of the disease among the public and the medical community.
- Form – a supportive and sharing community of CMT patients and family members.
Encourage – research concerning medicine and future treatments.
We, at CMT strive to improve the lives of people who suffer by offering support, knowledge and assistance. However, we just can’t achieve our goals alone. We will be happy for your assistance in executing our 2020 projects:
Raise Awareness:
- Strengthen ties between the Association and leading physicians in every medical center.
- Association lectures at neuro-muscular field conventions.
- Drafting a mental support protocol in cooperation with mental health centers.
- A widespread campaign to raise awareness of the disease in cooperation with the European Federation.
Community Support:
- Monthly webinars in different fields lead by professional experts.
- A quarterly newsletter.
- Accessibility of information through a website and social media.
- Support groups for patients and family members.
Promoting Research and a Medical Solution:
- Forming ties with pharmaceutical companies and CMT associations worldwide.
- Promotion and funding of research for medicine and future treatments.
- Establishing an infrastructure to include future medication in the national healthcare basket.
Fundraising
- Crowdfunding projects.
- Fundraising by funds, governmental entities, and bids.
- An annual fundraising event.