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We challenge you to pronounce #AtaxiaTelangiectasia!
Difficult to name? More difficult is living with it. Can you help us find a cure for this disease?
Collected
1.060€
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We challenge you! Can you say "ataxia telangiectasia?"
Difficult? Well, you can help us make it sound, because what is not named does not exist. And it is a rare and neurodegenerative disease, with no cure, that affects about 30 children and young people in Spain, and hundreds around the world. Its effects are diverse, causing significant progressive disability: motor problems, it forces them to use a wheelchair around the age of 9, produces immunodeficiency, difficulty speaking, vision problems, respiratory complications ... and a greater probability of suffering from tumors.
For this reason, from Aefat, an association that brings together some 30 families in Spain, we lead this international awareness campaign that has the participation of the main family associations from other countries: Action for AT and AT Society (United Kingdom), AT Children's Project (USA), BrashAT (Australia), Associazione Nazionale AT (Italy), AT Europe (France), Atileyasam (Turkey), Live Association (Switzerland), Twan Foundation (Netherlands), as well as families from countries where it does not yet exist association, like Argentina.
Because we want it to be known. So that it doesn't take years to get a diagnosis and so that more funds and resources are devoted to your research. And more so now, with the circumstances of the Covid-19 pandemic that have caused the cancellation of many solidarity events.
As Patxi Villén, president of Aefat and father of Jon, aged 17, explains, “in addition to being a rare disease, we have the problem that it is difficult to pronounce, so people, including journalists, close people and their own Families, when they talk about it, tend to name it as 'rare disease' (and there are more than 7,000), 'ataxia' (and there are more than 300 types), or AT for short. And so we cannot make it known. And if it is not known, it is much more difficult for it to be diagnosed earlier, for it to be investigated, for us to achieve more inclusion for our children and improve their quality of life… ”.
With this INTERNATIONAL VIDEO, families call for the solidarity of people who want to support their cause by recording a short video in which they say "I support the research of ataxia telangiectasia", publishing it on their social networks with this text:
I SUPPORT THE INVESTIGATION OF #AtaxiaTelangiectasia WITH @Aefat.
And you?
1- Watch this two minutes video with children and young people from all over the world
2- Record yourself saying "I support ataxia telangiectasia research." Or some other phrase that contains the words "Ataxia Telangiectasia". And publish the video on any of your social networks with this full text.
3- Donate in our Challenge #AtaxiaTelangiectasia #GivingTuesday at Migranodearena.org. With your support, you are helping children and young people with this rare disease to have hope for a cure (a research project that Aefat is financing at the Clínica Universidad de Navarra)
4 -I encourage @xxxxx and @xxxxx to participate (tag two friends)
(Copy and paste all of this text when you post your own video)
THANK YOU VERY MUCH FOR BEING PART OF THIS FIRST INTERNATIONAL CAMPAIGN TO RAISE AWARENESS ON ATAXIA TELANGIECTASIA
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Aefat is a non-profit association created in 2009 and declared of public utility since 2014, which is made up of family members and people related to patients with ataxia telangiectasia from different parts of Spain. It also maintains close contact with the families of those affected in Latin America. Aefat belongs to FEDER (Spanish Federation of Rare Diseases) and FEDAES (Federation of Ataxias of Spain).
Ataxia telangiectasia (AT or A-T) is one of 300 types of ataxia that exist. It usually manifests before two years of age. It affects the functions of different organs and causes inability to coordinate movements, progressive loss of mobility, difficulty in speech, stunted growth, immunodeficiency, premature aging, difficulties in eating, skin and vision problems, pneumonia and others complications. Patients are more prone to malignant tumors. Patients are fully aware of their illness, since it does not affect their mental faculties, but TA prevents them from independently performing the basic activities of daily life such as dressing, performing personal hygiene, eating, etc. Even so, we must not forget that they have the capacity to think, feel, love and, of course, to be happy.
AEFAT (www.aefat.es) es una asociación que agrupa a las casi 40 familias con niños y jóvenes afectados por ataxia telangiectasia en España. Es una enfermedad rara, genética y neurodegenerativa que aún no tiene cura ni tratamiento.
La ataxia telangiectasia causa una grave discapacidad progresiva, inmunodeficiencia, problemas respiratorios, dificultad en el habla y la visión, y más probabilidad de sufrir algunos tipos de cáncer, entre otras complicaciones.
Nuestros objetivos son:
- Apoyar a los afectados por la ataxia telangiectasia y sus familias
- Impulsar y financiar la investigación sobre la enfermedad
- Procurar una mejor atención médica y calidad de vida para los afectados
- Dar mayor visibilidad a la enfermedad
- Sensibilizar a la sociedad
- Recaudar fondos para la investigación de la enfermedad
Aefat pertenece a FEDER (Federación Española de Enfermedades Raras) y FEDAES (Federación de Ataxias de España), y a nivel internacional forma parte de la A-T Global Alliance.
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Comments (14)
sara
Mots ànims Lola! Muchos ànimos a todos!
Myriam
Mucho ánimo!!
Cristina
¡Estupenda idea!, porque la A.T. además de "rara" es difícil de pronunciar :-(
vera almancio
Mucho ánimo y apoyo a todas aquellas personas y familias que lidian con esta enfermedad❤️
Rosa
Ánimo Lorena, Cloe se merece todo!!!
MARIA EUGENIA
Vamos Cloe! Cuentas conmigo
PEDRO
Cloe, eres una campeona.