first conference in Merida, Yucatan, Mexico. This is a major step for UPA! and will be focused on promoting early and accurate diagnosis and standards of care. Their intention is to identify healthcare professionals with a willingness to specialize in interdisciplinary care for Duchenne muscular dystrophy. May 14 will include families and patients as a first step to educate the growing Duchenne community about the importance of genetic diagnosis, the impact of optimal care, as well as, information about research and clinical trials. Annel Guzmán, president of the organizing committee of this first event is planning a second conference for 2012 and intends to create momentum around diagnosis, care, and treatment for all boys in Mexico.
In Mexico and the rest of Latin America, there is a critical need for accurate diagnosis. Typically diagnosis is confirmed by elevated CK, muscle biopsy, and families. Without a genetic (molecular) diagnosis, boys with Duchenne are not included in the TREAT-NMD global database and therefore would not be potential candidates for exon skipping trials. Guadalupe drove to Atlanta to meet with Madhuri Hedge in an effort to initiate a collaboration with Emory genetics for genetic testing. While Emory is not able to donate the testing, hopefully UPA! and Emory University will have the ability to facilitate testing at least temporarily until UPA! is able to advocate for coverage through the Mexican government or some type of sponsorship to follow same pattern to other countries in Latin America. All boys deserve access – to accurate diagnosis, optimal care, opportunities to participate in clinical studies/trials, and to a life of quality.
To enhance the event, a conference on Genomic Medicine will be hosted by Gerardo Jimenez PhD Chair, Working Party in Biotechnology, Organization for Economic Co-Operation and Development (OECD) Council member of the Human Genome Organization (HUGO).
For those interested in more information on the conference: http://upaduchenne.org/upa_merida/index.php