Achondroplasia Conference

Gijón, 9/28/2019

Experts round tables, first meeting of ALPE’s Scientific Committee and presentation of the book Sentimental illiterates.

The Scientific Committee of the Foundation, which will advise the Foundation on hot topics of health and research, was publicly presented; discussion tables were organized among specialists to seek consensus; and the scientific and historical dissemination on achondroplasia book Sentimental illiteracy was presented.

In the words of the director of the ALPE Foundation, Carmen Alonso: “The emotional climate of these meetings between families and specialists is always very, very exciting, as if we all got along and supported each other very clearly. Here synergies are created, forces are taken, mood is built for the return home, projects are outlined, important decisions are made, people understand each other.”

In the morning, before the public ceremony, which brought together more than three hundred people, experts round tables were organized in which they sought to reach consensus on fundamental and sometimes controversial aspects of clinical care, surgical performance, the fight for social rights, inclusive education, family life and youth. The most reputed experts from Spain (and other countries as in the multidisciplinary care table) in bone dysplasia and dwarfism participated in these discussion groups.

The event was officially opened by the Minister of Health and Social Welfare, María Luisa Carcedo, the Secretary of General for Health, Faustino Blanco, the Deputy Minister of Justice of the Principality, Encarnación Vicente and the Mayor of Gijón, Ana González.

The coordinator of the ALPE Foundation, Susana Noval, thanked the presence of the Scientific Committee, which would meet for the first time the next morning and that will advise and respond to families and persons with ASDD (Achondroplasia and other Skeletal Dysplasia with Dwarfism) through the ALPE Foundation on issues of great importance today. There are five human clinical trials underway for achondroplasia products and patient organizations, especially the ALPE Foundation, whose weight on the world scene is large, need to be endorsed, informed and advised by a Scientific Committee like this, whose members are renowned scientific and clinical specialists: Ravi Savarirayan of the Murdoch Children's Research Institute in Melbourne; Laurence Legeai-Maillet and Joana Bengoa, from the Necker Institute, in Paris; Morrys Kaiserman, scientific disseminator based in the USA; Avner Yayon, researcher in biotechnology of Israel and collaborator of the ALPE Foundation since its birth in the distant January 2000; Belén Pimentel and Guillermo de la Cueva, researchers at IBIMA, in Málaga. The mission of the Scientific Committee will be: "To provide ALPE with expert advice based on latest scientific and clinical information to help families impacted by skeletal dysplasias make informed decisions regarding their health."

A particularly impressive moment of event, before the presentation itself, was the testimony of Esther, mother of Isaac, a child with a rare skeletal dysplasia, who lives after a series of unfortunate (at the least) events, has now and forever severe tetraplegia. The room was silent and respectful before bursting into applause. Esther asked all the clinics and scientists in the room: "Please publish, share the mistakes because we learn from the mistakes" and "pay attention to those humble and often very knowledgeable: the patients and their families. May arrogance not make you lose humanity.”

After it, the book Sentimental Illiterates was presented. Rafael Bengoa, international expert in health management, made the presentation. He has shaped the Basque health system and worked with Barak Obama in his health system reform. He now works on the healthcare system organization in Northern Ireland. Bengoa has stressed the importance of patient-centered care and is concerned with the global perspective and insisted on the need for good multidisciplinary reference units in the Health System of Spain.

The presentation of the book brought memories of friendship and grief and claims of respect and inclusion. "All we want is to live in peace," said author Maria Garde, a historian who yielded to Carmen Alonso's instances to carry out this project that brought her experience, training, and also her heart into play. Maria warns: "Be careful with ALPE because, as soon as you get close, it's done: you're abducted and you're already part of it."

During the night there was an “espicha”, a traditional Asturian informal dinner, which is also a tradition at ALPE events in Asturias. Everybody, especially in international congresses, appreciates this way of dining and celebrating that promotes communication and closeness. All washed down with cider.