CATEGORIES: Research | TRIAD
cmt and me app

CMT&Me COMPETITION

by | Oct 1, 2020 | 0 comments

Thursday, October 1 – Saturday, October 31 2020

Newsletters

THIS OCTOBER, RAISE AWARENESS AND RAISE MONEY!

It is still CMT Awareness month in Europe. The European patients’ groups we worked with on the development of the CMT&Me app are now raising awareness about Charcot-Marie-Tooth across the pond.

CMT is labelled as one of the most common rare diseases, but there are still a lot of unknowns about this condition, both within the medical world and among the general public: CMT month provides an opportunity to raise awareness and better understand the disease.

The CMT&Me community also participates in its own way in this special month!

CMT&Me participants are encouraged to participate in a special charity game.

The CMT&Me study is launching a competition between countries where the study is taking place to help you raise awareness while raising money for charity.

How to participate?

To participate, all you have to do is to update and complete your medical profile in the CMT&Me app between the 1st and 31st October. The principle is simple: for each CMT&Me medical profile which is fully completed in October, $1 will be donated. Each donation will be shared between the 2 major CMT patients advocacy groups, Hereditary Neuropathy Foundation and CMTA.

How to win?

The more profiles completed, the more donations your national association will receive!

The country with the best ratio of medical profile completions per number of participants will be declared the winner (between the USA, Germany, United Kingdom, Italy, Spain and France).

Learn more on this topic

Related Blog Posts

Sneak Peak of Fall Newsletter: CMT Research Study Survey

My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study. The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate

Building Awareness on CMT and Supporting the Patient Community – HNF Announces Support from Pharnext

HNFpharnext recently entered into a partnership with the French biopharmaceutical company, Pharnext, to help raise awareness of Charcot-Marie-Tooth (CMT) disease and support the CMT patient community through several initiatives. Building awareness is key! Pharnext’s support will assist HNF in distributing HNF’s CMT Update quarterly newsletter, enhancing the Global Registry for Inherited Neuropathies (GRIN), setting up activities for CMT September Awareness Month in the US and strengthening the CMT Inspire Community.

Quality of Life and CMT Research

Did you know that 95% of clinical trials fail? There are multiple causes, most related to efficacy or safety, which obviously can be harmful and risky for patients. The risk-reward of enrolling in trials is a judgment call based on the devastating effects of disease related to quality of life (QoL) or life-threatening disease. With CMT, the risk-reward is more of a challenging question for many, as CMT in most cases is non-fatal.

Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.

Hot off the press

It seems like almost weekly there is another new publication on CMT with interesting basic biology. While an earlier “Hot off the press” highlighted the work of Cherry and co-workers at the University of Texas Southwestern Medical Center who showed show that neurons lacking a gene for rab7 result in neuropathy.

New Study on CMT Type 2B

If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.

Hot off the press

Some recent papers on Charcot-Marie-Tooth (CMT) disease go to show that we are steadily and impressively peeling back the complexity of the biology even though it is a relatively common rare disease with several thousand publications on it.

Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

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