Onderzoekers van het UMC Utrecht Hersencentrum hebben ontdekt dat het C21orf2-gen het risico op ALS aanzienlijk kan verhogen. In een […]
Join the fight and help us discover the genetic basis of ALS. Start or support a local initiative to raise funds. Project MinE, make it yours!
100% van iedere donatie gaat naar de analyse van DNA profielen.
De ALS Unit van Hospital La Paz-Carlos III in Madrid en FUNDELA, de Spaanse Stichting voor onderzoek naar ALS, zijn partners van Project MinE en hebben zich tot doel gesteld het DNA van 750 mensen te analyseren. Wanneer het project in Spanje goed verloopt kan dit doel in de toekomst zelfs verhoogd worden naar 1.000 DNA profielen.
De ALS Unit in Madrid, deel van het La Paz Universiteitshospitalencomplex, is de oudste en grootste ALS unit in Spanje. De Unit levert integrale gezondheidszorg voor ALS patiënten in heel Spanje en experimentele behandelingen door klinische onderzoeken. De unit doet, vaak samen met andere Europese onderzoekscentra, onderzoek naar biomarkers, genetische oorzaken, kwaliteit van leven, voortgang van de ziekte, enz., en is ervan overtuigd dat de oorzaak van ALS gevonden kan worden door internationale samenwerking in studies zoals Project MinE.
In Spain, we have several ambassadors for Project MinE.
As the aunt of an ALS patient, D. Fernando Schwartz is very involved in the ALS community.
He is a former ambassador of Spain to the Netherlands and previously to Kuwait and Bahrein, and retired from diplomatic service to join Spain’s foremost daily, El País, to write leaders on international politics. In 1992, after a stint as communications director of the parent company, Prisa, Fernando became anchorman in one of TV’s most successful daily talk shows, Lo+Plus. As a writer, he is the author of 15 novels, one of which, The Misencounter, was awarded the Planeta Prize. The novel told of the tragedy of a woman affected by ALS. The actual character was Schwartz’s maternal aunt.
As the daughter of an ALS patient, Prof. Solas is very involved in the ALS community.
In her research she has directed doctoral thesis on various aspects of ALS as well as publications on an experimental model of sporadic ALS.
As the husband of an ALS patient, D. Adolfo Martínez is very involved in the ALS community.
The Spanish international football player Fernando Torres is proud to be ambassador for Project MinE and the fight against ALS. Fernando is forwarder of the Spanish National team (already 110 times), he’s won the Nation’s World Cup, the Nation’s European Cup twice, the Europe Champion’s League and the UEFA Europe’s League. Fernando played with Liverpool, Chelsea, AC Milan and currently again with Atlético de Madrid.
Fernando Torres presented a 2016 calendar to raise funds for FUNDELA and ProjectMinE. Read more.
Carlos Matallanas (Madrid, 18-4-1981) was balancing his career as a journalist with his activities as a semi-professional football player when, in June 2014, he was diagnosed with ALS. From that moment on, he has devoted his efforts to the search of a cure for this neurodegenerative disease. Sadly, he past away March 2021.
Through his blog, Mi batalla contra la ELA (My struggle against ALS), he was determined to raising awareness on the degradation of the body as a consequence of ALS, a disease that could affect any of us. Carlos Matallanas pinned his hopes on Project MinE, raising funds through the FUNDELA foundation and, with the help of friends and family, organizing multiple events.
“The funds raised are not for me, they’re for all of us, for those that are already sick as well as for those that have not yet been affected by this terrible lottery that is ALS”
Javier has combined the studies and then the profession of Journalist with a modest but intense career as a semi-professional footballer in Madrid and Andalusia. In 2007 he joined the Sports section of El Confidencial. In 2014, at the age of 33, being coordinator of the section and still as an active player, he is diagnosed with Amyotrophic Lateral Sclerosis (ALS), a serious neurodegenerative disease.
Project MinE research in Spain is performed at the ALS Unit at Hospital La Paz-Carlos III in Madrid.
Prof. Mora Pardina is Hoofd Neurologie van Hospital Carlos III. Hij heeft zijn opleiding en training gehad in Massachusetts General Hospital en Tufts Medical Center in Boston. Op de ALS Unit in Madrid wijden prof. Pardina en zijn personeel al hun tijd aan het verbeteren van de kwaliteit van leven van de Spaanse ALS patienten, en introduceren zij de voor Spanje nieuwere concepten van geïntegreerde multidisciplinaire zorg, experimentele behandelingen en ondersteuning van patiëntenorganisaties.
Since the late nineties, Dr Delia Chaverri has served as neurologist at the Hospital Carlos III. There, she met Dr Mora and worked with him to create and develop the first ALS unit in Spain. Devoted mainly to patients care, she has participated in a large number of ALS international clinical trials. In 2014 the Hospital merged with Hospital La Paz, forming now a single institution where she coordinates the ALS unit. More than 300 patients are treated regularly at the unit by a high level multidisciplinary team.
In Spanje wordt de fondsenwerving voor Project MinE geleid door FUNDELA (Fundación Española para el Fomento de la Investigación de la ELA).