Tag: Archive

My dream is to drive a yellow Chevrolet Camaro like the one in the Transformers movies

Hello, my name is Alexander and I am 14 years old. I live in Geneva, Switzerland. I love to play games on my iPad or my PS4. I’m really good at it and I play with other boys in the world thanks to the internet! If I could change something in the world I would make all diseases disappear, especially mine! My favorite experience was when I could do paragliding in the alps, I had such a sensation of freedom! I will do it again soon at the summer camp! I don’t have a favorite person around me, I love my parents and my brothers, I have three of them! And my best friend is Jacques, whom I know since I was only 2 years old. My day is a success when I can beat my latest record on my game! My dream is to drive a yellow Chevrolet Camaro like the one in the Transformers movies. I love this car, it’s so cool! My father promised me we would have a ride in one this summer! I look forward to it!

My name is Alex Lowe, I am 18 years old and I live in Plantation, Florida. If I could change one thing in the world it would be to “Cure Duchenne”. My best memory is when I graduated from High School last year. My funniest memory is not knowing why I was laughing uncontrollably when I was given morphine for a surgical procedure. The 3 people I would invite to dinner would be Vanessa Rose, Dwayne Wade and Stephen Colbert. My day is a success when I accomplish something new.

Jag heter Max och ska snart fylla 8 år. Jag bor med min mamma, pappa och vår hund Buzz i Sverige. Det bästa jag vet är att spela spel på min iPad och på mitt Playstation. Just nu spelar jag Guitar Hero och en massa hårdrockslåtar. Min dag börjar vid 7-tiden då jag gör min sjukgymnastik och sedan äter mina mediciner med frukosten. Sedan kör mina föräldrar mig till skolan där jag har en assistent som är med mig hela skoldagen och på fritids. Jag gillar matematik och logik men har svårare för att läsa och skriva. På rasterna leker ha med mina klasskompisar och förflyttar mig med min elrullstol. Mina föräldrar hämtar mig efter skolan och sedan avslutar vi dagen med sjukgymnastik och tar på mina benortoser som jag sover med. Min största dröm är att gå åka på en Disney kryssningsbåt och åka i deras häftiga vattenrutschbana.

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I am Max and I will soon turn 8 years old. I live with my mom, dad and our dog Buzz in Sweden. I love to play games on my iPad or on my Playstation. Right now I play the game Guitar Hero and a whole lot of hard rock music. My day starts at around 7 in the morning. My parents do my physiotherapy on me and after that I eat breakfast and take all my medicines. My parents drive me to school where I meet my school assistant who is with me all school day. I like math and logics but I find reading and writing difficult. On breaks I play with my school mates and drive my power wheelchair. My parents pick me up after school and I end the day by my parents doing another set of physiotherapy on me and I put on my orthosis that I sleep in. My biggest dream is to go on a Disney cruise ship and go on their awesome water slide.

When I grow up I’d like to be a car designer

Mi chiamo Daniele, ho 8 anni e faccio la seconda elementare. Ho un fratellino di 2 anni che si chiama Gioele e che amo molto e l’ho aspettato per tanto tempo. Da grande vorrei fare il disegnatore di macchine e mi piace giocare con le automobiline. Per ora, le mie giornate sono piene di cose!! La mattina mi sveglio, faccio colazione e poi mi lavo. Poi mi vesto, a volte chiedo aiuto a mamma o papà. Poi insieme a Gioele usciamo con papà, saliamo in macchina e andiamo prima a portare il fratellino al nido e poi papà mi porta a scuola. Quando esco torniamo subito a casa per pranzare perché verso le 3 arriva Martina che è la mia fisioterapista. Alle 5 vado a scuola di teatro e con altri bambini saliamo sul palco e con la maestra Anna impariamo a recitare. Poi torno a casa, faccio i compiti, gioco un pochino e poi vado a cena. Dopo cena guardo i cartoni animati e poi mi preparo per dormire, indosso le mie scarpine della notte (tutori), leggo una storia con mamma e poi mi addormento. Quando sogno penso che se potessi cambiare qualcosa nel mondo, mi piacerebbe poter riuscire a far diventare buone le persone cattive.

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My name is Daniele, I’m 8 and I’m in second grade. I have a 2 years old little brother, whose name is Gioele I love him and I had been waiting for him for a long time. When I grow up I’d like to be a car designer because I really like playing with toy cars! But right now my days are really full of things! At mornings I wake up, I have breakfast and I wash myself. Then I get dressed, sometimes with the help of mom or dad. Then my dad drives Gioele to his nursery school and me to school. When I get out of school, we go straight home to have lunch because Martina, my physical therapist, arrives at 3 p.m. At 5 p.m. I have theatre class: I jump on stage with other children and we learn how to act with my teacher Anna.Then I go back home, I do my homework, I play a little and I have dinner. After dinner, I watch some cartoons, then I get prepared for bed, I wear my orthopedic “night shoes”, I read a story with mom and I get asleep. And when I dream I think that if I could change something in the world I’d like to be able to turn mean people into good people.

Hola! Soy Jorge Mancera Reyes, tengo 18 años. Desde los 12 deje de caminar pues tengo Distrofia Muscular Duchenne. Actualmente curso la preparatoria en el sistema abierto. Mi sueño estudiar la universidad y terminar la carrera en física para después ser astrónomo.

La foto es con Nani un ex jugador del Manchester United, fue en Guadalajara Jalisco y estuvieron otros amigos con distrofia. Fue en el año 2010. Esta foto es un ejemplo de que no hay limites si queremos hacer algo.

Saludos desde México!

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Hello! I am Jorge Mancera Reyes, I am 18 years old. I have Duchenne muscular dystrophy and I stopped walking when I was 12 years old. At this moment I go to a public high school. My dream is to study physics at university and to become an astronomer.

The picture is with Nani, a former player of Manchester United. It was with other friends with dystrophy in Guadalajara Jalisco, in 2010. This picture is an example of if you truly want something, there are no limits. 

Greetings from Mexico!

Movies are my passion

Mi nombre es Fran Rabal Segura, tengo 24 años y nací en Lorca (Murcia – España) el 1 de febrero de 1991, aunque vivo desde el primer momento en otra localidad cercana, en la costera y muy bonita Águilas, como podéis ver en la foto de la izquierda.

Una de mis mayores pasiones, y de las actividades con las que más disfruto en mi vida, es el cine y las series de televisión, la ciencia ficción y fantasía como género favorito tanto escrita como visualmente, así como el fútbol y el baloncesto; sobre todo si se trata de los equipos de la Región de Murcia: Real Murcia y UCAM Murcia Club Baloncesto, de los que soy un fiel forofo. También me gusta viajar y visitar lugares nuevos, y, como no, hablar o chatear con mis amigos.

Para finalizar, quiero destacar la gran labor que llevamos a cabo entre todos los dirigentes y miembros de Duchenne Parent Projects para luchar contra esta enfermedad. Os pido por favor que colaboréis con nosotros en la medida que os sea posible para que se pueda seguir investigando y pueda un día decirse que es posible detener o curar las distrofias musculares. Toda ayuda es poca!

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My name is Fran Segura Rabal, I am 24 years old and was born in Lorca (Murcia – Spain) on February 1, 1991, but from the first moment I live in another town nearby at the seaside, in beautiful Eagles, as you can see on the photo on the left.

One of my greatest passions and activities that I enjoy most in life are watching movies and television series. Science fiction and fantasy are my favorite genres, both written and visual, and I also like football and basketball; especially Real Murcia and UCAM Murcia Basketball Club, of which I am a big fan. I also like to travel and visit new places, and, of course, talking or chatting with my friends.

Finally, I want to highlight the great work that we perform among all leaders and members of Duchenne Parent Projects to fight this disease. I ask you to please help us as much as possible so that further research can be done and maybe one day we can say that it is possible to stop or cure muscular dystrophies. Every bit of help is useful.

Hola, me llamo Raymundo, tengo 13 años y tengo distrofia muscular de Duchenne. A veces me pongo triste porque no puedo hacer muchas cosas que me gustan, pero luego se me pasa. Me gustan mucho los videojuegos y las niñas. Soy muy alegre a pesar de mi condición, tengo muchas ganas de vivir y no me doy por vencido. Apoyanos para que haya más dinero para estudiar más esta enfermedad. Somos muchos niños que estamos así.

My dream is to run and to play all day with my friends!

Το όνομα μου είναι Ερμής και ζω στην Αθήνα στην Ελλάδα! Το πρωί στις 9.00 πηγαίνω σχολείο με τον μπαμπά μου , μετά πάω στην πισίνα με την κυρια Δέσποινα και κολύμπαμε γυρνώ για μεσημεριανό και μετά πάω στο MDA Hellas και παίζουμε με τον Σταύρο. Το απόγευμα γυρνάω σπίτι με τον αδελφό μου βλέπω λίγο videos τρώμε και μετά με κυνηγάει η μάνα μου να πάω για ύπνο! Μου αρέσει να πηγαίνω με τον αδελφό μου τον Έκτωρα στην παραλία να κάνουμε μπάνιο και να παίζουμε με την άμμο. To παγωτό σοκολάτα. Το όνειρο μου είναι να τρέχω και να παίζω όληηηηη την ημέρα με τους φίλους μου. Όταν έχω την οικογένεια μου κοντά μου το βράδυ. Αν μπορούσα να άλλαζα κάτι στον κόσμο θα ήθελα το σχολείο να τελείωνε νωρίτερα!

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My name is Hermes and I leave in Athens, Greece. My typical day starts at 8.00 when I wake up and gο to nursery. Then I meet with Despina and she teaches me how to swim, then I pass from my house to eat something and go with my friend Stavros to MDA to play and do some physical exercises. In the afternoon I come back home where I play with my brother we watch some videos and then my mother chases me to go to bed! I love to go with my brother Hector to the beach and play with the sand and the sea. I love to eat a chocolate ice cream. My dream is to run and to play all day with my friends! My day is a success when in the evening we all get together in bed. If I could change something in the world, Ι would make the school hours less!

Me llamo Gilberto Alcaraz González, tengo 12 años, y tengo dos hermanos que se llaman Carlos y Fátima, somos triates, con mis hermanos me la llevo bien, aunque a veces peleamos mucho. Soy muy ocurrente y divertido me gusta mucho platicar. Uno de mis mejores amigos se llama Sergio, con él juego “carreritas” en nuestras sillas de ruedas eléctricas. Sergio y yo somos beneficiarios de ADMO A.C y asistimos ahí todos los miércoles. Me gusta jugar PSP mis juegos favoritos son de carreras, me gusta mucho ver televisión, las caricaturas como “Un show más”, animal planet. La materia que más me gusta es Ciencias Naturales y odio las matemáticas. Me encantan las quesadillas pero el aguacate no me gusta para nada. También me gusta mucho la música, el género que más me gusta es el rock clásico, mi grupo favorito “The Beatles”. Mi sueño, es ser mostrador de carros en una agencia de Porsche. También me gustaría ser diseñador automotriz, todo lo que tiene que ver con carros me llama la atención. Me gustan mucho los animales, principalmente los animales exóticos. El cine es de mis lugares favoritos para salir, principalmente cuando son películas de acción, también me gusta salir con mi familia, con mis primos y tios, la playa me gusta mucho, quisiera ir más seguido y que pudiera ir toda mi familia.

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My name is Gilberto Alcaráz González, I am 12 and have a brother and sister who are Carlos and Fátima, we are triplets. We play most of the time, tough as any brothers we fight sometimes. I am funny and sometimes I am a menace; I like to talk a lot. I have a very good friend, Sergio, which I play races with to see who is faster in ours electric wheelchairs. Sergio and I attend ADMO every Wednesday. I love to play my PSP games, mostly car racing, watch TV, cartoons like “A more show” and Animal Planet. The subject I like most is Natural Science and I hate Math. I like “quesadillas” but avocado is something I don’t like at all. In addition, I enjoy Music, my favorite genre is classic rock, “The Beatles” is my favorite band. My dream is to be a Porsche dealer, also I want to be a car designer, and everything about cars caught my attention. I love animals, especially exotic ones. One of my favorites hobbies is going to the movies, in particular if is an action movie. I like a lot going out with my family, cousins and relatives. Beach is a place where I enjoy going, but I would like to be there more often with all the family.

A vision to improve the lives of everyone with Duchenne 

My name is Savant Thakur, I live in Melbourne, Victoria, Australia and I was diagnosed with Duchenne Muscular Dystrophy (DMD) when I was 4 years old. Although I lost my ability to walk at the age of 10 and have progressively lost most of my upper limb strength, I have never let this come in the way of achieving my goals in life. In fact, my medical condition has been a great motivation. Since childhood I have been fascinated by the molecular processes that go wrong in DMD and always harboured an ambition to find a cure for DMD by correcting these defects. This desire was reinforced further during my frequent trips to the Royal Children’s Hospital (here in Melbourne) as a young boy, where I experienced first-hand the wonderful work done by world-leading medical specialists, allied health clinicians and medical researchers.

Over the years I have become more and more determined to reach my goal and this one-eyed determination has given me the courage to fight through the adversities and medical complications to excel academically at school and university. In 2013, I graduated from The University of Melbourne with a Bachelor of Biomedicine degree and subsequently completed my honours degree last year (2014) with exceptional grades. Currently I am in the first year of my Ph. D, which I am undertaking at the Basic and Clinical Myology Laboratory, headed by Prof Gordon Lynch (a world renowned muscle expert) at the Department of Physiology, The University of Melbourne. I can proudly say that I am living my dream as a biomedical researcher, performing research to discover novel treatments for muscle wasting disorders that will improve the quality of life for individuals affected by DMD and other related conditions.

Outside the professional medical research sphere, I have a strong passion for promoting awareness of DMD research in the general public, across media circles and funding bodies. My other interests include watching sports – Australian rules football (I am an avid Western Bulldogs supporter) cricket and soccer, viewing science and war documentaries, using social media to comment on scientific issues, reading about latest scientific discoveries and dining out.

My daily routine involves leaving the house at around 10am for university in a Maxi Taxi; a busy day at the lab setting up and conducting experiments alongside my hand-on support Ms Nicki Cranna (research assistant) and spending the remaining time reading journal articles to keep myself up to date with the medical literature; once back at home I jump into bed for a powernap and then study late into the night.

My message for others is:

Strive towards your goals, just push on and never give up. Anyone who has a dream and wants to achieve something can and the disability should be no barrier.