The Asociation Congenital Multiple Arthrogryposis Spain (AMC Spain), member of We are patients, organize next Saturday and Sunday, Oct
The Asociation Congenital Multiple Arthrogryposis Spain (AMC Spain), member of We are patients, organize next Saturday and Sunday, October 2 and 3, at the Sports Complex of the Royal Automobile Club of Spain (RACE) in Saint Sebastian of the kings (Madrid), the first edition of its Solidarity Golf Tournament.
The Tournament, initially scheduled for last year but had to be canceled due to the pandemic of COVID-19, aims to offer participants the opportunity to enjoy a exceptional day practicing a outdoor sport such as golf and, in turn, contribute to a great cause of solidarity, since the funds raised will be used to improve the quality of life of patients with AMC and promote investigation this rare neuromuscular pathology.
As Cristina Villodas, president of AMC Spain, explains, “this Tournament is a great opportunity for golf lovers to enjoy their favorite sport and also help a good cause. People with AMC require therapies –Physiotherapy, speech therapy, psychomotor skills, occupational therapy, etc.– which are vital to improve their quality of life and autonomy. Events like this help us to finance this type of therapy, in addition to raising awareness and publicizing this pathology so unknown. We hope it will be a success and may this be the first of many sporting events that we can organize ”.
For pre-register in the Tournament, from which you can collect more information through this link, contact the organizers at the phone numbers 916 589 121 or 916 589 148.
Likewise, the organizers have enabled a ‘row 0’ for all those people who, not being able to participate in the Tournament, want to collaborate with this solidarity cause. For make your donation through ‘row 0’ click here.
The AMC is a neuromuscular ailment what causes contractures in the joints and, in severe cases – there are some 400 kinds arthrogryposis–, physical malformations, problems in internal organs with vital commitment, cleft palate, etc., aspects that make it extremely difficult to movement and the day to day of the affected people.
Specifically, the term ‘arthrogryposis multiplex congenita’ (AMC) is used to define the presence of contractures in the joints because muscle stiffness at the time of birth of a child, thus limiting the possibility of movement.
Thus, and although the AMC is the consequence of an excessive growth of the fibrous tissue of the joints, in each case it is presented in a different way, so there are many subtypes and with a symptomatology different.
Patients affected by this rare disease need to undergo various therapies intensively, including physiotherapy motor, cognitive and respiratory; speech therapy; rehabilitation postoperative; occupational therapy and hydrotherapy. A need of the collective to which is also added the investigation, especially genetics.
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