UPA! cura Duchenne
Leslie Guzman established UPA! cura Duchenne in 2007 with the purpose of integrating under one emblem and name the diverse efforts of leading Latin and Ibero-American organizations focused on treatment, therapies, and a cure for Duchenne and other neuromuscular disorders.
New! A short article about Diego’s wonderful achievement in the Cincinnati marathon can be downloaded here.
UPA!’s main objective is to give children and young people with Duchenne/Becker, along with other people affected by neuromuscular disorders, the opportunity to live a normal life, and to work towards treatments for the current generation of children and young people suffering from neuromuscular diseases. UPA! is dedicated to improving the quality of treatment for patients by encouraging Ibero-American associations with common goals to participate together in global efforts, seeking unity and collaboration between associations, integrating the region, and gathering knowledge and resources in an attempt to heighten the understanding and consciousness of society and government regarding neuromuscular disorders.
What we do for our region
We function as an Information Center of Excellence in Spanish in which the Spanish speaking population can find answers to their questions about Duchenne, its progression, treatment, care, therapy, genetic counseling, research and studies, among other relevant themes. We do this by translating and publishing information through newsletters and on our website, running the www.upaduchenne.org blog and social networks and organizing and taking part in conferences and workshops.
We are currently the point of unity between Associations in Latin America in order to develop joint programs that help the cause. This achievement has allowed us to form the UPA! Iberoamerican Network where other associations located in countries such as Argentina, Ecuador, Peru, Spain and Venezuela can reach us and work together towards our common goals.
Additionally, through our website, it is our aim to help the community by providing relevant information that improves the quality of life of the families affected by DMD, such as current news on advances in existing studies, genetic laboratories, education topics, and much more.
Alliances and International Agreements
Being aware of the impact of uniting efforts to achieve common goals, the first actions of UPA! were focused on identifying and establishing links with the most important organizations in the field. As a result, in 2007, during Debra Miller’s visit to Mexico, UPA! signed a strategic alliance with Cure Duchenne, with the goal of facilitating and sharing resources to increase awareness, disseminating information, and fundraising. A press release was issued to publish this event.
At the same time UPA! established collaborative links with Parent Project Muscular Dystrophy, sharing Pat Furlong’s efforts in the neverending battle to remain on the vanguard of advances in research and treatment to end Duchenne and offering most reliable and updated information to the Duchenne community. The UPA! web site is now the best place to find information on Duchenne in Spanish.
Elizabeth Vroom, President of United Parent Project Muscular Dystrophy, contributed with her inspiration in the establishment of UPA!, and we have open support links with UPPMD.
Since 2008 UPA! has been a proud member of the TREAT-NMD network with whom we work closely in our quest to improve the life of many young warriors who every day face new challenges with strength and love.
Supporting Leslie’s vision, in 2008 Diego’s family members, led by Guadalupe Franco, Diego’s grandmother, founded UPA! México as a non-profit association, pursuing the same objectives as the UPA! Network. Following the same model, in Mexico we have established a network of connections with organizations, public and private institutions, research centers, health professionals and government offices for their support to our cause, Duchenne.
Member of the TREAT-NMD network
As a member of TREAT-NMD, UPA! is entrusted with the goal of uniting efforts in order to collaborate and communicate openly to support neuromuscular projects. Through Katie Bushby we have followed the advances of this Network of Excellence and have taken part in joint efforts.
UPA! is working with TREAT-NMD on their efforts to have a global database of patients with Duchenne and other neuromuscular disorders, seeking to compile data for further research and developments. To join this effort, we have implemented a Latin-Iberoamerican Registry for Duchenne, serving the Spanish-speaking community. The UPA! Registry is now being adopted by several countries in Latin America as their national registry. The UPA! registry can be accessed via our websitehttp://www.curaupaduchenne.org/registro/index.php; it is currently being filled out by members of UPA! and will continue to evolve dynamically.
UPA! is also collaborating with TREAT-NMD and other organisations on translating information material into Spanish. A Spanish version of the valuable Lancet Neurology publication on the Diagnosis and Management of Duchenne muscular dystrophy will be available soon, as will the related Family Guide for Duchenne, a most helpful document for our families to have. UPA! is also aiming to print the Family Guide in brochure format and make it available to as many families as possible throughout our region.
On behalf of our community members, UPA! would like to state our open recognition and gratitude to all people and organizations that are working hard to change the lives of all our children and young men with Duchenne and their families. Our thanks to you all.