Luxembourg Non-Profit Raises Awareness for Cerebral Palsy

Friday 6 October 2023 marks World Cerebral Palsy Day, a global awareness-raising event first observed in 2012, with several activities also taking place in the Grand Duchy around this date.

Luxembourg non-profit organisation cerebra.lu is marking this occasion through two specific actions. Firstly, the association took part in Info-Handicap's "Marche Gourmande" (gourmet walk) in Luxembourg-Ville on Sunday 1 October 2023, offering members of the public an opportunity to learn more about cerebral palsy and get in touch with affected families. Secondly, cerebra.lu is supporting an international competition which aims to encourage people with cerebral palsy to come up with original ideas for a product or service that would improve their lives. The winners will receive a $5,000 prize and work with a group of designers and engineers to make their idea a reality.

To find out more about these actions and the association in general, Chronicle.lu spoke with cerebra.lu President John Coughlan on the occasion of World Cerebral Palsy Day.

Set up in 2022, cerebra.lu is quite a new association with strong connections to Luxembourg's English-speaking community. The board consists of members of three English-speaking families (Lesh, O'Brien and Coughlan), all of whom have teenage sons with cerebral palsy.

John Coughlan shared that his personal motivation to establish such an association dated back to when his son was diagnosed with cerebral palsy at the age of seven months. "We looked in vain for a local support group. There were associations that helped people with disabilities in general, but not one dedicated to the condition, where we could meet other parents with a similar experience," he explained. Recalling that cerebral palsy is the most common form of childhood-onset physical disability, he added that "such a group was really lacking. It took us a long time but we finally managed to set it up."

Concerning the aim of the association, John explained that this was "not only to be a support group, though that is very important, but also to raise awareness about cerebral palsy and to improve the lives of people affected both in Luxembourg and in the wider world." He mentioned that the feedback already received has shown that the association "fills a real gap".

In terms of support from the wider Luxembourgish community and authorities, John stated: "While we started as a small group of English-speaking families, we have received support from all quarters in Luxembourg." One example is the support of medical professionals specialised in childhood disability at the Centre Hospitalier du Luxembourg (CHL), who are working with cerebra.lu on a scientific advisory board. Moreover, the City of Luxembourg (Ville de Luxembourg - VdL) and Bernard-Massard will donate funds raised from the sale of this year's "Cuvée du Schueberfouer" to the association. Similarly, the Fondation du Tricentenaire, one of the main service providers for adults with disability, was "fully on board" in supporting this year's World Cerebral Palsy Day campaign.

Cerebral palsy is a physical disability affecting movement and posture. As reported by cerebra.lu, it affects on average 1.85 out of 1,000 births, i.e. 17 million people worldwide, and about 1,000 people in Luxembourg.

(Above) Max Hahn, Luxembourg's Minister for Family Affairs and Integration, and John Coughlan's son, David, at the recent "Marche Gourmande"; (below) Katherine Lesh's son, Simon, at the event (Credit: cerebra.lu)