Posted - February 2013 in HSPRF News
Foundation committee member visits
Whilst on holidays in Spain last year, HSPRF fundraising manager and committee member Tim Xiros took the opportunity to meet with AEPEF President, Francisco Rodriguez. The AEPEF (Asociación Española de Paraparesia Espástica Familiar) is the Spanish association supporting people and families with HSP and, similar to the HSP Research Foundation, aims to bring together patients with HSP and promote research towards a cure.
Arranging to meet in Madrid, first the language barrier had to be overcome. With Tim not able to speak any Spanish and Francisco speaking minimal English, the quick thinking Francisco brought his son Victor along to act as translator!
But any language difficulties were quickly forgotten when the two started to share their experiences about growing up with HSP and hope of one day finding a cure for the disease. For Tim this was very encouraging as meeting up with Francisco on the other side of the world proved that this is a global fight against HSP. Francisco played a major part in forming the Federation of European HSP Associations bringing together all the HSP associations from Denmark, France, Italy, Netherlands, Norway and Spain.
Both agreed that by sharing knowledge and research on a worldwide scale, people and families with HSP can look forward to further progress and development towards treatment of HSP.
As a gift, Francisco presented Tim with a textbook produced by the AEPEF containing articles and presentations on HSP from medical professionals. He also invited Tim to the annual AEPEF congress that was due to be held later in the year. Unfortunately Tim couldn’t attend as he was returning to Australia but thanked Francisco for his hospitality and generosity. A trusting friendship between two HSP communities was formed that united the passion and hope towards a cure. Hola amigos! (hello friends!)