Real Sociedad and Bayer Leverkusen will play a charity match for SPG50, an ultrarare neuromuscular disease

“Score a goal for SPG50!” is the slogan of the match that will take place on 29 July at the Reale Arena in San Sebastian to benefit the Columbus Foundation to treat spastic paraplegia 50 (SPG50).

Real Sociedad and Bayer Leverkusen will play a charity football match on 29 July at 6pm at the Reale Arena stadium in San Sebastian. The event aims to raise funds for the work of the Columbus Foundation in the field of rare diseases and to promote solidarity among those attending the stadium.

This unique match will bring together two leading football teams from LaLiga and the Bundesliga. Players from Real Sociedad and Bayer Leverkusen will join together in a spirit of camaraderie and friendly competition, while contributing to a noble cause.

The money raised during the charity match will go towards a clinical trial for spastic paraplegic 50 (SPG50). SPG50 is a devastating genetic neuromuscular disease that affects a very small number of children. The Columbus Foundation, Elpida Therapeutics and Viralgen have joined forces to develop a treatment that is now in clinical trial in the United States and that from January 2024 will begin a trial in Osakidetza, in the Paediatrics Service of the Hospital Universitario Donostia and in the BioGipuzkoa health research institute. Children affected by the disease in Spain, Germany and Italy will participate in this clinical trial. The product used in this trial is produced at Viralgen’s facilities. In addition to the Columbus Foundation, the Guipuzcoa Cancer Association will support the event and part of the proceeds will go to support summer camps for children affected by cancer in Guipuzcoa.

A Fila 0 will be set up so that all those who wish can also contribute to the cause. Tickets will be sold through the Real Sociedad website and the Columbus Foundation website (fundacioncolumbus.org).

Both Real Sociedad and Bayer Leverkusen are committed to social responsibility and contributing to their communities. This charity match is a manifestation of their joint commitment to make a positive difference in society and specifically in the development of treatment for SPG50.

“This pre-season we will be playing at the Reale Arena again, we want the match against Bayer Leverkusen to be a party. Real Sociedad wants to collaborate so that together we can raise funds and help in the field of rare diseases,” said Jokin Aperribay, president of Real Sociedad.

“In the world of football it is always important to recognise your opponent as a necessary part of your preparation. We will use the moment to gather energy and also to help those who need it most. Real Sociedad and Bayer Leverkusen, another great European duel with you in mind,” said Roberto Olabe, Real Sociedad’s director of football.

“It will be an attractive match that will serve to test us against another good team that will also be playing in Europe next season. It will be a special match because we want to help these children and also because of Xabi’s return to the Reale Arena,” said Real Sociedad coach Imanol Alguacil.

“Being part of the multinational Bayer and the good cause for which this friendly match is being held, it is a very good reason to travel from our pre-season training location and fulfil our commitment,” said Fernando Carro, chairman of the board of Bayer 04 Leverkusen.

Naturally, Xabi Alonso is also looking forward to this activity, not only because San Sebastian is the venue for the match. “Health is the most important thing for us, but above all for our children,” said the Bayer 04 coach. “If we can help those who are not so fortunate, then we should do so.

“An opponent of extraordinary European standard gives us the chance to gain important benchmarks during this phase of the season preparation,” said Bayer 04 sporting manager Simon Rolfes. “The fact that we are able to fulfil our social responsibility also makes this football match a great event, which we are very pleased about.

We are grateful for the support and cooperation of our sponsors as well as the commitment of the players and coaching staff of both teams to make this event a success.

We invite all football fans and the community at large to join us in this special encounter. Together, we can make a difference and support those who need it most.

For match updates and information about Row 0: https://fundacioncolumbus.org/evento/partido-futbol-benefico-real-sociedad-bayer-leverkusen-metele-un-gol-al-spg50/

About PGS50

PGS50 is a neuromuscular disorder that usually presents with global developmental delay, moderate/severe intellectual disability, impaired or absent speech, microcephaly or small head size, seizures and progressive motor symptoms. Muscle tone problems eventually lead to wheelchair dependency. This spasticity can extend to the upper limbs, which can lead to tetraplegia or partial or total loss of use of all four limbs and the torso.

The disease affects only three children in Spain who are in the process of undergoing surgery, and there are about 80 affected children worldwide. The only gene therapy treatment is in the development phase in the United States with very encouraging results. The Gipuzkoa-based company Viralgen is the one that has manufactured the drug with which the affected children are being treated.

About the Columbus Foundation

The Columbus Foundation was established in Valencia in 2017 with the aim of developing and making medical innovations for oncological treatments and rare diseases of monogenic origin accessible with a special focus on children. In 2019, the Foundation opens its doors in the United States through the Columbus Children’s Foundation.

The Foundation counts on culture as an ally to disseminate its activity and help raise funds. It programmes charity concerts with unique characteristics in major cultural and musical venues featuring top-level artists. These events help to finance the medical treatment of

medical treatment of minors in specialised centres and support for their families. In March 2021, it launched the Objetivo10 programme, which aims to develop effective treatments for ten rare diseases in just ten years.

About the clinical trial

The clinical trial will be carried out at the paediatrics department of the Hospital Universitario Donostia, in the OSI Donostialdea of Osakidetza and will have Dr Itxaso Martí, a specialist in neuropaediatrics and neuromuscular diseases, as principal investigator. Dr. Martí and her team have extensive experience in the care of children affected by similar diseases, as well as in the techniques and procedures proposed in the trial. They will be supported by the Clinical Research Platform of the IIS BioGipuzkoa which, considering its experience in the management, support and development of clinical trials of advanced therapies, will act as a promoter of this important trial. The clinical trial involves testing the product on people with the disease in order to demonstrate the efficacy and safety of the product. It is conducted under a strict protocol and supervised by medical professionals.

For more information, visit fundacioncolumbus.org