The People



Charles Sabine

A former TV reporter and war correspondent, Charles found out he had the Huntington gene and has since become a global advocate. Co-founder of HDdennomore.


Elena Cattaneo

A leading geneticist, professor at the University of Milan, founder of a lab dedicated to the study of Huntington’s and Life Senator in Italy. Co-founder of HDdennomore.


Ignacio Muñoz-Sanjuan

A neuroscientist and Huntington’s expert; the co-founder of Factor H with Claudia Perandones, an NGO to aid and advocate for Huntington sufferers in Latin America. Co-founder of HDdennomore.   


Claudia Perandones

A physician specialised in Medical Genetics; the scientific director of the Latin American Network for Huntington’s Disease; Brenda Lara’s physician. Co-founder of Factor H and of HDdennomore.  


Brenda Lara

From Buenos Aires. At 15 years of age, she suffers from Juvenile Huntington’s (JHD). She lost her Father to HD on her last birthday after her Mother had left, unable to cope. She’s been cared for by her aunt Norma Lara ever since as if she were her own daughter.


Dilia Oviedo Guillén

From El Difícil in Colombia. At 79 years of age, she has lost her husband and 5 of her children to HD and cares for 4 others full time, with the help of her daughter, Maribel. They struggle daily with minimal resources in their remote rural community.

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Anyervi Gotera Prieto and his mother María Prieto

From San Luis in Maracaibo. Anyervi is 13 and loves football, but was taken out of school by his Mother due to the amount of bullying he suffered for being from a HD family. His Father, Argenis, has advanced HD, he’s lost the ability to speak and is cared for full-time by María.

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The Soto Soto Siblings - María Ester, Yosbely and Franklin.

From Barranquitas in Lake Maracaibo, the original community that was studied to find the Huntington gene. An impoverished and struggling community with a high incidence of HD. The siblings feed and care for their children with difficulty with help from a local charity and by begging.

Zuleta Velasquez family

The Zuleta Velasquez Family

(Whole family not pictured)

From Colombia. Due to the armed conflict, the family were displaced to a neighbourhood in Medellín which was plagued by drugs and gun violence. The adult children all help in the care of their father Jhon who has advanced HD.