Less Rare

Overview

Project Summary

Machado-Joseph disease is the most common autosomal dominant ataxia worldwide. Patients suffering from this genetic condition (and other ataxias) develop neurodegeneration that causes progressive ataxia, difficulties in speaking, swealing, and even in breathing, culminating in premature death since it still lacks a cure. MJD patients and their relatives face severe daily struggles. Even more, patients are often misleading with drunk people due to the high instability of their gait, which makes them to be ashamed.
We will use artistic languages to engage society to know Machado-Joseph Disease, a rare neurodegenerative disorder. A dance performance named “Brain Flows for the Flawless” will be choreographed and exhibited in several places. A mini book “Rare people moving hearts” with educational information about disease will be produced. A public event under the theme: “Rare deserves to be recognized”, with the goal of making this condition better known by the society, will be organized.
We expect to engage patients, scientists and artists and make this RARE condition less RARE for other people!

The performance will be presented at European Researchers´Night 2022 and FICA 2022. 

Main Goals

- Bring science to society through artistic language;
- Make Machado-Joseph disease better known (Less Rare);
- Raise awareness of the daily difficulties that these patients face;
- Identify rare diseases as research areas that need the support of funding agencies, because despite being rare, they are quite severe, requiring all scientific support in order to find a cure.

Project Details