On Friday, January 20, a symbolic check of 16,000 €, with the donations collected over two years by the Hotel Barcelona Princess, was delivered to the CIBERER for the investigation of rare diseases including X-linked Adrenoleukodystrophy.
During 2015 and 2016 the Barcelona Princess Hotel joined the fight against rare diseases through monthly voluntary salary donations of the hotel workers and participating in sporting events in Barcelona such as half marathon and triathlon with the objective of raise funds on migranodearena.org, a crowdfunding website to raise money online for NGOs.
The motivation for this solidarity challenge comes from within our hotel. The personal case of a colleague who worked in this hotel in Barcelona has allowed us to learn more about rare diseases and identify ourselves with their associated difficulties. (See Video)
On June 21, 2015 we formed a team. And three workers of the Hotel Barcelona Princess participated in the Garmin Barcelona Triathlon to raise donations to investigate on X-linked Adrenoleukodystrophy, a genetic abnormality that affects mainly children between 4 and 10 years. (See Video)
On February 14, 2016, ten solidarity runners, among them some workers of the Hotel Barcelona Princess and the Hotel Negresco Princess, ran the eDreams Mitja Marató for all those diagnosed with X-ALD, to raise awareness of this rare disease and help in the reseach for better treatments and for its early detection. Most cases can be successfully treated if diagnosed on time.
In this half marathon in Barcelona, the Barcelona Princess Team stood on the solidarity podium of MigranodeArena.org due to our good cause was among the first three causes that more funds raised. (See Video)
We repeat the triathlon in Barcelona on October 9th. 6 athletes of the #BarcelonaPrincessTeam rode a bike, ran and swam during the Barcelona – Triahtlon by Santander to fight against rare diseases and collect donations for the CIBERER, the institute that investigates them. (See Video)
Through monthly voluntary donations between workers – company and donations on migranodearena.org, during 2015 and 2016 the Hotel Barcelona Princess raised 16,000 € which has gone to CIBERER.
In the delivery of this symbolic check, Santiago Hernández, Director of this Hotel at the Barcelona Forum, expressed thanks all the hotel employees, external people and solidarity athletes for participating and donating in this good cause.
Dr. Aurora Pujol, researcher ICREA and medical geneticist offered a brief exposition of the results of the research during the last 2 years.
The donation event was also attended by CIBERER researchers, Andrés Medrano in charge of training for CIBERER and Carmen Sever, vice chairwoman of the association against leukodystrophies ELA-Spain.
As part of our CSR (Corporate social responsibility) commitment, each year the Hotel Barcelona Princess has a solidarity cause which is chosen by the Hotel staff. Soon we will communicate our next cause of solidarity 2017.