Illingworth Bear Accompanies Patient Advocacy Group On Their Bid To Raise Awareness For Rare Genetic Disease
Friedreich’s Ataxia is a rare genetic disease which causes movement problems as a result of damage to the nervous system. It affects nerve fibres in the spinal cord which results in interference with information from the brain being carried to the body.
The condition progressively worsens over time and this means it is extremely life-changing for sufferers. However, one patient advocacy group isn’t letting that stop them, and have taken Illingworth bear under their wing alongside raising awareness for the genetic condition. The determined group of individuals, known as the French Association for Friedreich’s Ataxia otherwise know as AFAF used a system of modified bikes to transport sufferers safely.
- Poor balance
- Difficulty walking
- Slurring of speech
Can lead to
- Scoliosis (curving of the spine)
- Heart problems
In total, an impressive 595 km was completed by the group over the course of 7 days, a whopping average of 85km a day. Through outstanding projects like these, the organization hopes to both raise awareness for the condition and obtain sufficient funds to continue research and eventually find a cure.
At Illingworth Research, our work is fuelled by stories like these which show the lengths people will go to combat disease and raise funds for further clinical research. We are hopeful that our nurses working within this condition will enable patients and patient advocacy groups such as this one to continue their fantastic fundraising efforts, whilst perhaps also participating in clinical research.