The Alfa-1 Association of Spain, the patients and family members affected by the Alpha-1 Antitrypsin Deficiency, is organizing the programme Alfas en Camino 2018 during the last week of August 2018. Consisting of a total of 115 kilometres which will be travelled from the town of Sarria, in the province of Lugo, to Santiago de Compostela.
Over the centuries, millions of pilgrims have come together on the roads of Santiago to turn the route into a global symbol of effort, friendship, coexistence and spirituality regardless of sex, ethnic group, religion, motivation or physical condition . Because of this inspirational force, as well as for its impressive cultural heritage, the Camino de Santiago is a Cultural Route of the Council of Europe, World Heritage Site and Prince of Asturias Award for Concord.
Our call is especially addressed to people affected by Alpha-1 Antitrypsin Deficiency and their relatives, caregivers and friends. It is also open to patients with other respiratory diseases, especially minority ones, as a global call for attention from society towards Alpha-1 Antitrypsin Deficiency, COPD and minority rare diseases; and to encourage physical exercise and healthy eating as a key to the management of this type of pathology.
Alfas en Camino aims are:
● To give visibility to the group of patients with AAT deficiency and raise awareness of this rare disease and its associated pathologies.
● To demand the establishment of specific policies that guarantee the access of patients with pulmonary involvement to available treatments.
● To disclose the need for all patients with COPD to have the AATD test.
● To promote that physical exercise and contact with nature and fresh air are part of the daily life of patients with COPD and other respiratory diseases.
● To incorporate children and young people as a means of promoting a healthy life, key to prevent the development of lung disease due to AAT deficiency.
● To rains public awareness of COPD and its prevention, as well as other respiratory diseases, especially minority ones.
The route will take place in a total of 7 days, from August 26 to September 1, 2018, covering a daily average of 19 km.
It is intended to encourage the participation of patients regardless of their degree of disability or need for supplemental oxygen.
Each patient can choose the section or sections to be carried out each day according to their capacity and physical shape. For this purpose, a support network will be available, including the replacement of oxygen and batteries, vehicles for the transfer from and to the reference meeting points, or prior alerts to health centres and hospitals, which will know the presence of the group in area.
Participants will have a map of each of the stages with indications on the geographical profile, difficulty, meeting points and places accessible by vehicle. The Organization guarantees that the distance to walk each day, as well as the pace, is the individual decision of each patient.
The participants with no respiratory ailment, or those patients who wish depending on their capacity, can complete all stages, will also have access to the necessary logistical infrastructure to and from the places where they overnight, and will also have access to the normal daily support.
The group will arrive at the outskirts of Santiago (Monte do Gozo, the first place from which the Cathedral of Santiago can be seen) on Friday, August 31, heading to Compostela for Saturday, November 1, with enough time to fulfill all the pilgrim rites. and get the Compostela, a certificate issued by the Cathedral of Santiago to those pilgrims who cover more than 100 km walking.
STATEMENT OF SANTIAGO
This action seeks to increase public awareness for the Alpha-1 Antitrypsin deficiency, its patient impact and health consequences, in addition to providing patients and family a space in which to exercise and live for a few days, on a millennial and cultural route.
Alfas en Camino includes the preparation and signing of a manifesto, the Statement of Santiago, which includes the demands of Spanish and international alpha patients in terms of diagnosis, healthcare and the right to treatment.
The Declaration is supported by the Recommendations of the European Group of Experts on Alpha-1 Antitrypsin Deficiency, promoted by the international alliance of Alpha-1 Global patient associations, which seek to raise awareness and response in all European countries to the needs of diagnosis and care of those affected by the Deficit.
FUNDRAISING FOR RESEARCH
The participants of Alfas in Camino 2018 who so wish may raise funds for research by selling kilometres or full stages.
The collection made by Spanish patients with AAT Deficit will be donated in full to INCLIVA, Health Research Institute linked to the University Clinical Hospital of Valencia and endorsed by the Health Institute Carlos III, which is developing the project “SERPINA1 gene editing through the use of CRISPR / Cas9 in monocytes of patients with Alpha-1 Antitrypsin Deficiency ” under the direction of Dr. Francisco Dasí, member of the Advisory Committee of the Spanish Registry of Patients with AATD, REDAAT.