The sadness, uncertainty and the lack of available medical information on the condition led them to create a reference point and a support network for families.

Initially, Nieves and Iñigo dealt directly with the families that contacted the charity in search of information, advice and support. In 1998 the number of families had grown to such an extent that in order to safeguard their members and continue to provide the level of support they so urgently needed, the couple employed the first member of staff that they financed themselves.

Slowly the charity’s activities grew and the support and services that are now offered to families include specialist nurses, psychologists and social workers. There are now 48 people working for the charity: a dedicated team of professional health care workers, a team who manage fundraising and admin and a charity shop team who all work tirelessly to improve the quality of life for families.