Chile News

New campaign to sponsor kids growing up in needy HD families in Colombia

Today we started a new campaign to help children living with HD in Colombia. see attached link please and spread the word! to Donate, please click here for Project Abrazos for HD

also see an explanation of the program.

Thank you and I hope that together we can help these children grow up with a sense of hope and dignity. Their life is ahead of them and we can make them grow up healthy and proud!

Click on this link to see the brochure: Project_Children_Colombia_May2016

IMG_2777

Nature publication speaking out for the benefit of HD communities in Latin America

I was able to get an opinion piece in the prestigious scientific journal Nature. I hope this piece might be the beginning of a renewed conversation about how to help these communities. Here is the link: Nature article

Enjoy

nacho

Visit to Cetram and the day care center in Santiago, Chile

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

IMG_2823

IMG_2828

IMG_2822

IMG_2817

 

IMG_2827

IMG_2829

IMG_2833

IMG_2834

 

New center opens in Santiago!

Dear all- today marks a historic day in the solidarity with the patients and their families in Chile and in all of Latinamerica- the Chilean HD association together with its collaborators have inugurated a center for the care of people affected with HD. Claudia Perandones attended the opening ceremony in Santiago. Rodrigo Osorio, the president of the Chilean Society, and the force behind this project, lead the ceremony. For more information about the center, see the link below and also the Chilean HD association website! Thanks to all in Chile for making this possible, and for setting up an example of how public/private partnerships can work to bring better care for those affected with HD!

Day center link

Chilean HD association website