The Alpha-1 Association of Spain, of patients and families affected by Alpha-1 Antitrypsin Deficit, organizes the Alfas en Camino 2018 program the last week of August 2018. They will cover a total of 115 kilometers on foot, from the town of Sarria, in the province of Lugo, to Santiago de Compostela.
Our call is especially aimed at people affected by Alpha-1 Antitrypsin Deficiency and their family, caregivers and friends. It is also open to patients with other respiratory diseases, especially minority ones, as a global appeal for society’s attention to Alpha-1 Antitrypsin Deficiency, COPD and Rare minority Diseases; and to promote physical exercise and healthy eating as the key to managing this type of pathology.
MISSION
Alphas on the Way pursues:
- Give visibility to the group of patients with AAT deficiency and publicize this rare disease and its associated pathologies.
- To demand the establishment of specific policies that guarantee the access of the patients with pulmonary affectation to the available treatments.
Disclose the need for all COPD patients to undergo the DAAT test. - Promote that physical exercise and contact with nature and clean air become part of the daily life of patients with COPD and other respiratory diseases.
- Incorporate children and young people as a means of promoting a healthy life, key to preventing the development of AAT deficiency lung disease.
- Raise awareness of COPD and its prevention, as well as other respiratory diseases, especially minority ones.
PROGRAM
The route will be carried out in 7 days, between August 26 and September 1, 2018, covering a daily average of 19 km.
The intention is to promote the participation of patients regardless of their degree of disability or need for supplemental oxygen.
Each patient will be able to choose the stretch or stretches to be performed each day depending on their capacity and physical shape. For this, there will be a support network that includes the replacement of oxygen and batteries, vehicles for the transfer from and to the reference meeting points, or prior alerts to health centers and hospitals, which will know the presence of the group in area.
Participants without respiratory ailment, or those patients who so decide according to their capacity, will be able to complete the entire stages, also having the necessary infrastructure to travel to and from the towns where they stay overnight, and support during their journey.
The group will arrive at Monte do Gozo, the first place from which the Cathedral of Santiago can be seen, on Friday 31 August to enter Santiago de Compostela on Saturday 1, with enough time to fulfil all the pilgrimage rites and obtain the certificate issued by the Cathedral of Santiago to those who cover more than 100 km on foot.
DECLARATION OF SANTIAGO
The action seeks public awareness of the Alpha-1 Antitrypsin Deficit and its consequences, in addition to providing patients and families with a space in which to exercise and live together for a few days, on an ancient and cultural route.
Alfas en Camino includes the preparation and signing of a manifesto, the Declaration of Santiago, which includes the demands of Spanish alpha patients and those from around the world regarding diagnosis, health care and the right to treatment.
The Declaration is supported by the Recommendations of the European Group of Experts on Alpha-1 Antitrypsin Deficit, promoted by the international alliance of Alpha-1 Global patient associations, which aim to achieve awareness and response in all European countries to the needs of diagnosis and care of those affected by the Deficit.
FUNDRAISING FOR INVESTIGATION
The participants of Alfas en Camino 2018 who so wish may raise funds for research by selling kilometers or complete stages.
The collection made by Spanish patients with AAT Deficit will be donated in full to INCLIVA, a Health Research Institute linked to the University Hospital of Valencia and endorsed by the Carlos III Health Institute, which is developing the project “Gene editing of the SERPINA1 gene through the use of CRISPR / Cas9 in monocytes of patients with alpha-1 Antitrypsin deficiency ”under the direction of HP. Dr. Francisco Dasí, member also of the Advisory Committee of the Sapanish Registry of Patinets with AATD, REDAAT.
Monte do Gozo. The coordinators of the Centro Alfa-1 Galego (Dra. Torres) and Centro Andaluz de Granada (Dr. Casas), doctors from the Centro Alfa-1 Galego (Drs Alberto Fernández and Ramón Tubío) and Dr. Dasi
