Home

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.

On this page you can read the blogs written by UPPMD member organisations around the world, sharing their challenges, views, successes, solutions and stories.


If you wear a white coat: you should know best by Luz Berenice López Hernández, PhD – Friday August 28th 2015

Luz Luz Berenice López HernándezWhen I was nine years old, my younger brother Carlos began to feel weaker than the other kids, my mother visited different doctors, I remember they wore their “white lab coats” that bring to patients a feeling of confidence. Nevertheless, at least in Mexico, doctors are not always prepared enough to diagnose this disease, perform genetic testing or to bring genetic counseling. Preparation to treat diseases considered “rare” is still scarce in Mexico; since “rare diseases “are not as relevant as other public health problems.

My mother went to PPMD meetings in which researchers presented new insights to Duchenne Muscular Dystrophy, while my father took care of us in Mexico (the voice inside of me said: when I grow up, I want to wear a lab coat and know what to do). The disease-causing mutation of my brother was finally found in 2009 in the Leiden University Medical Center when he was 25 years old. We are grateful to the ones that “wear a white lab coat” and really know what they do, they care about improving techniques, tests and health systems, the ones that teach young minds that become researchers, clinicians and field specialists in biomedical sciences.

Now, I have a great group of colleagues who are neurologists, rehabilitation physicians, geneticists, pediatricians; science professors and students of biomedical sciences that in collaboration with parent´s associations from different states in Mexico, we all are trying our best to improve the way that Duchenne Muscular Dystrophy is diagnosed and treated in our country.

So, if you wear a “white lab coat” probably means that you can bring confidence to the ones that suffer this disease; you probably can change the system and improve healthcare in your own country or community. Even if Mexico is a limited-resource country, we encourage you to give your best effort to work and support all those families that suffer this genetic disease.

All our efforts in “genomic medicine”, molecular diagnosis, rehabilitation programs and orphan disease programs, should on first place serve to improve healthcare to underserved groups, to help all those children and families affected by Duchenne Muscular Dystrophy. Please get involved, join our research projects, support parent associations where you live, and find your own way to help. Mexico is rich in inner force and spirit of service.

Please, if you wear a “white lab coat” be kind, be prepared and see in your patient a person that needs you to know best.


 

Private prayers by Pat Furlong – Monday June 1st 2015

Pat FurlongI spoke with a mom of a 10 year old boy this week. She went through a long list of ‘hates’. She hates Duchenne. She hates the fact that she is unable to get to a certain clinic and see a certain doctor. She hated the fact that her son’s mutation was a duplication. She hated to see him fall. She hated what steroids have done to him, to his height, to his bones, to his face. She hated the idea of having a wheelchair in her home. She hated the teacher that did not seem to ‘get it’ in so many ways. She hated the fact that she could not ‘fix’ her son. She hated the world and everything in it. I could feel her heart breaking apart and as she sobbed on the phone, I asked her what I could do to help. more »

One global voice can make the difference by Nicoletta Madia – Thursday May 21st, 2015

Nicoletta MadiaOn May 18-19 in Brighton (UK), an international workshop was held on patient organizations activism around the world, organized by The Centre for Bionetworking, University of Sussex. The group was made up of patient organization delegates from UK, China, Japan, Korea, India, Taiwan, USA, Italy, researchers and teachers from the University of Sussex. more »

A lifetime of challenges by Deborah Robins – Friday May 1st, 2015

Doug & DebHow does one find a metaphor to reflect on a lifetime of challenges? There’s always the journey metaphor – rough roads, wrong turns, no sign posts…  but at my age my metaphors have gone the way of my mojo! more »

The Challenges the Duchenne Community is Facing by Alex Johnson – Wednesday April 15th, 2015

Picture Alex JohnsonI am Alex Johnson, founder of UK based Duchenne medical research charity Joining Jack and mother to seven year old Jack living with Duchenne. more »

« Page 1, 2»