Charcot-Marie-Tooth Association (CMTA)

• CMTA is the abbreviation for Charcot-Marie-Tooth Association
• The Charcot-Marie-Tooth Association (CMTA) is a non-profit organization focused on Charcot-Marie-Tooth disease (CMT)
• It is the world's leading organization dedicated to CMT
• The CMTA's mission includes finding treatments and a cure for CMT, while also improving the quality of life for those affected
• The CMTA provides resources, support, and information to patients, families, and medical professionals
• It funds research initiatives aimed at understanding the causes of CMT and developing effective therapies
• The CMTA promotes awareness of CMT through various outreach and educational programs.
• The CMTA plays a crucial role in patient advocacy, working to increase access to care and support for individuals with CMT
• The CMTA supports and provides guidance through all stages of having CMT

History

• The CMTA was founded in 1983 by Howard H. Huntoon
• Huntoon was an engineer who had CMT
• He founded the CMTA after an inconclusive visit to the National Institutes of Health
• He believed researchers and pharmaceutical companies were not dedicating enough attention to CMT
• He dedicated himself to assembling scientists, researchers and clinicians to find a treatment
• He served as president and chairman from 1983-2007

STAR

• Strategy to Accelerate Research (STAR) is the main initiative of the CMTA
• STAR aims to accelerate the timeline to an effective treatment for CMT
• STAR is composed of several components to achieve these goals
• STAR fosters collaboration between academic researchers and pharmaceutical companies
• One component is the STAR network which includes Centers of Excellence
• These centers offer comprehensive care and participate in clinical trials
• STAR also focuses on drug development by identifying promising therapeutic targets
• The program facilitates preclinical and clinical studies to evaluate potential CMT treatments

Research

• The CMTA funds research across various aspects of CMT
• This includes basic research to understand disease mechanisms
• Research includes translational studies to develop therapies
• Clinical trials are also an important focus of CMTA's research efforts
• Areas of investigation include gene therapy, drug repurposing, and other therapeutic approaches
• CMTA supported research has contributed significantly to advancements in CMT knowledge
• These advancements include gene identification and potential treatment strategies

Community

• The CMTA provides a community for individuals and families affected by CMT
• This involves support groups, both in-person and online
• The CMTA provides educational materials to inform patients and families about CMT
• The CMTA hosts conferences and events to bring people together and share information
• The CMTA's website and publications offer resources for managing CMT
• These resources cover topics such as exercise, nutrition, and assistive devices
• The CMTA community helps reduce feelings of isolation and empowers individuals with CMT

Awareness

• The CMTA works to raise awareness of CMT among the general public and healthcare professionals
• The CMTA participates in outreach events and campaigns
• The CMTA disseminates information through its website, social media, and publications
• Awareness efforts aim to improve diagnosis rates and access to care
• The CMTA collaborates with media outlets to share stories of individuals with CMT
• These initiatives help to educate people about the challenges faced by those living with CMT

Advocacy

• The CMTA advocates for the needs of the CMT community
• CMTA works to influence policies that affect access to care and research funding
• CMTA engages with government agencies and regulatory bodies
• CMTA supports initiatives to improve the quality of life for individuals with CMT
• The CMTA provides resources and training for patients to become advocates themselves
• This includes educating policymakers about the impact of CMT

The Charcot-Marie-Tooth Association (CMTA) is a non-profit dedicated to CMT. Founded in 1983 by Howard Huntoon, it provides resources, support, and funds research to improve the lives of those affected by CMT and find a cure.