Welcome to the website of United Parent Projects Muscular Dystrophy, the worldwide group of Duchenne Patient and Parent Organisations.
Duchenne Patient Advocates may be confronted with different challenges on a national level, but worldwide we fight for the same goal: to improve the lives of boys and men affected with Duchenne Muscular Dystrophy (DMD).
Blogs by UPPMD member organisations
The story of two lives, at first parallels, combined by the fight against Duchenne Muscular Dystrophy
By Nicoletta Madia
The third meeting on Duchenne and Becker Muscular Dystrophy was held in Madrid from 9 to 11 June, organized by Parent Project Spain, an organization of parents with children with this disease. The hotel room is full of people: mothers, fathers, grandparents and siblings. If you just look away from the screen where the slides are projected with the latest scientific updates, to look at people hand in hand, eyes full of hope, concentrated faces distracted by a child entering the room because he wants to show the newly made drawing or because he misses his family. “We just have to look in each others’ eyes to know that we feel exactly the same things” they say so to each other, Marisa and Nuria. Marisa has big eyes telling so much about her and her life. A man with a necklace around his neck with the name Uriel on it, his three and a half year old child. “The teacher was aware that something about Uriel was different.” “My husband and I had just taken the baby to the paediatrician, and that is when the long journey to the diagnosis Duchenne Muscular Dystrophy began. That day I felt confusion and a great sense of impossibility. I realized that the life I had lived up to that time was over. When an illness enters someone’s path, he dies and is born into a new life.” Nuria listens and nods. She found herself in those words and in the mixture of pain and strength with which they are pronounced. Nuria is delicate and attentive. She wants to write and does it in a blog eldesafiodepablo.wordpress.com that brings the word “desafio” (in English: challenge) and Pablo, her child of three and a half years, together. Just like Uriel. “As soon as we got the diagnosis, the doctor gave us the leaflet of the association after saying the name of the disease,” Nuria confides. “The next day my husband and I were already members. We could not do otherwise: when you get such a diagnosis, you feel alone and you are scared. Since then, the association has helped us away from fear and welcomed us into a big family. Parent Project Spain is a space where you can talk freely, where you can share your life with that of other people who live just like you, families who have the same weekly programs, the same problems, and the same achievements”. “I often think about when Pablo is older,” Nuria continues, shaking her husband’s hand next to her. “I know he will be happy. It will happen because we are now teaching him to value his skills and not focus on what he cannot do. He will find his way and live his life”. Marisa smiles, “They will be independent men, first of all from Duchenne. If there is anything you can learn from the new life that brought you illness, it is that you can live it fully and you can do it,” says Marisa with conviction. Unknown lives that are lived in parallel until the day of diagnosis, then find themselves laced, intertwined, united as by family ties, a power in the hands of an organization: a group of parents who acted out of their own individual pain for social change: “When you join the association you become the mother of all the children,” Marisa continues, “The fight is for each of them and I will fight it to the last days of my life. I will observe my son’s life at every moment, I will smile when he is happy and if one day he is sad, his mother will be there and take him to the moon.”
Maria Fries, mother of Mattias, has written a blog on the importance of collaboration between patient and parent groups. Please click here to read the blog.
Annemieke Aartsma-Rus PhD, Professor of Translational Genetics, has written a blog on CRISPR technology. Please click here to read the blog.