Claudia and I just returned from a wonderful trip to Santiago de Chile. We spoke about our work in Enroll-HD (together with Cristina Sampaio and Joe Giuliano from CHDI and Bernhard Landwehrmeyer from Ulm) and the current therapeutic strategies. Cetram is a wonderful center for movement disorders, headed by Dr. Pedro Chana. Right now, Cetram (www.cetram.org) is the leading recruiting site for Enroll-HD in Latin America. In addition to the excellent neurologic care they provide, Pedro together with his wife Daniela Alburquerque, an occupational therapist, and our friend Rodrigo Osorio (President of the Chilean society for HD; http://www.huntington.cl/) opened a day center for the care of HD patients. Approximately 25 people attend every day, and they conduct lots of excellent activities for them… far from being a place where patients feel their sickness, the center gives them a safe place to regain their identity and find comfort. The activities include gardening, martial arts, speech therapy, helping prepare food, sell the crafs they make, etc. I believe this center should be a model for other places around the world. The center is located next to Cetram, and the proximity to the medical teams makes things easier for the caregivers and the patients themselves. They also familiarize themselves with the nurses, psyhoclogists and physicians, and develop a much closer realtionship. This center tries to apply a holistic approach to the treatment of HD, and to help people regain their dignity and a stronger sense of belonging and independece.
A wonderful achievement by terrific people who care deeply for the families affected by HD. It was a privilege to spend time with them.
nacho
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