CMT&Me Launches Global Fundraising Contest for CMT Awareness Month in Europe

CMT&Me Launches Global Fundraising Contest for CMT Awareness Month in Europe
0
(0)

This October, in observance of Charcot-Marie-Tooth disease (CMT) awareness month in Europe, the CMT&Me study is launching an international competition aimed at informing people about this group of inherited disorders, and raising funds for research, according to a press release.

The competition only requires that patients in certain countries update and complete their medical profile in the CMT&Me app. Donations from completed profiles will go to two major CMT patient advocacy groups: the Charcot-Marie-Tooth Association and the Hereditary Neuropathy Foundation.

The CMT&Me smartphone app, developed based on VitaccessMyRealWorld digital platform, provides patients with educational and informational resources about CMT and allows them to input their own medical data.

This can be useful for people with the disorders, since the inputted information can help patients track their disease and its symptoms over time, and share their personal data with healthcare providers and loved ones.

Optimization of the app for the CMT community, as well as the development of all the educational material, was done in collaboration with an international group of CMT experts, patients, and patient advocacy organizations.

Notably, this data also can be used for research purposes to better understand CMT. That is the goal of CMT&Me, a study designed by Vitaccess in collaboration with Pharnext. By collecting medical data from patients, along with data from background and quality-of-life surveys, the researchers hope to understand what it is like to live with this rare disease. The trial also aims to support the development of new treatment strategies.

The ongoing competition also is seeking to increase the amount of data available for research purposes. It requires that a patient update and complete their medical profile in the CMT&Me app at some point during the month of October.

For every medical file that is fully completed during October, $1 will be donated, with all donations split evenly between the two patient advocacy charities.

This event is not just a fundraiser, however. It’s also an international competition to see which country, among all those where the CMT&Me study is being conducted, can get the most completed profiles.

Six countries are competing: the U.S., the U.K., Germany, Italy, Spain, and France. The country with the highest ratio of medical profile completions per number of participants in the study will be declared the winner.

To participate in the CMT&Me study, a person need only install the app on a smartphone (either Android or iOS systems) and answer a few questions to confirm their eligibility. The app is available in English, German, French, Italian, and Spanish.

Additional information about the CMT&Me study is available at its webpage.

Marisa holds an MS in Cellular and Molecular Pathology from the University of Pittsburgh, where she studied novel genetic drivers of ovarian cancer. She specializes in cancer biology, immunology, and genetics. Marisa began working with BioNews in 2018, and has written about science and health for SelfHacked and the Genetics Society of America. She also writes/composes musicals and coaches the University of Pittsburgh fencing club.
Total Posts: 2
Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência.
×
Marisa holds an MS in Cellular and Molecular Pathology from the University of Pittsburgh, where she studied novel genetic drivers of ovarian cancer. She specializes in cancer biology, immunology, and genetics. Marisa began working with BioNews in 2018, and has written about science and health for SelfHacked and the Genetics Society of America. She also writes/composes musicals and coaches the University of Pittsburgh fencing club.
Latest Posts
  • CMT new genes, bioinformatics
  • CMT&Me, awareness month, Europe
  • myelin and HDAC6 inhibition

How useful was this post?

Click on a star to rate it!

Average rating 0 / 5. Vote count: 0

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?