Reflections on instilling a sense of hope

Reflections on instilling a sense of hope

What is the difference between having no hope and having hope? Meet Brayan, a 13-year old boy I met when visiting the town of Barranquitas, in Venezuela, in December 2018, the last time I was able to visit. This town is a forsaken, isolated village where in every corner one…
Farewell our dear friend and collaborator Zoraida Soto

Farewell our dear friend and collaborator Zoraida Soto

Zoraida always received us with a child-like smile. She was the “mother” of the local San Luis association FAHUN (Fundación Amigos de Huntington), an association founded in 2017 by young people at risk for HD in Maracaibo. Zoraida acted as the Secretary of the organization, and she often brought a…

Rest in Peace Darwin Soto and Maria Gotera Villasmil

No matter how many patients we meet along our journey, it is always difficult to say goodbye. Death is inevitable. For our friends suffering with HD, it comes earlier and always in tragic circumstances. However, there are moments in life that are impossible to forget. The pictures below were taken…
In Solidarity and Gratitude

In Solidarity and Gratitude

Helping in the time of COVID-19 We all know that the most vulnerable sectors of any society are always the worst hit in times of crisis. The arrival of the novel coronavirus has isolated our communities even further. The most vulnerable sectors of any society are always the worst-hot in times of…
Project Abrazos completes 5 years bringing hope to kids at risk for HD

Project Abrazos completes 5 years bringing hope to kids at risk for HD

The project ‘Abrazos’ (Hugs) started in 2015 and it aims to provide donations for children in Colombia and Venezuela living in families affected by HD and in extreme poverty conditions. Their family situation is dire and many of the kids have been abandoned by one of their parents. Often times,…
Factor-H and Fundación Habitat LUZ from Maracaibo start working together

Factor-H and Fundación Habitat LUZ from Maracaibo start working together

MEETING BETWEEN THE MARACAIBO PATIENT ASSOCIATIONS, FACTOR-H AND FUNDACION HABITAT LUZ … THE BEGINNING OF OUR EFFORTS TO BRING CHANGE TO THE COMMUNITIES MOST AFFECTED BY HD IN THE WORLDHappy New Year 2018!On Monday December 11th, we held an all-day meeting in the offices of Fundacion Habitat Luz, a Maracaibo,…

BRINGING MEDICAL SUPPORT TO HD CLUSTERS IN VENEZUELA

During the last couple of months, we have managed to reach a lot of patients in both San Luis and Barranquitas, the two largest communities with HD in the world. We conducted two medical assistance visits with the local HD foundations and the medical foundation Primero Auxilios. This is really…

Donations are delivered to the suffering communities in Maracaibo - thanks to the Barcelona patients' association UEFH

As the country of Venezuela spins out of control and people run out of food and medication, the most significant communities affected by Huntington’s disease in Maracaibo are starving. According to our friend and collaborator Dr. Ernesto Solis, a resident of Maracaibo and a tireless advocate of the families affected…

Barranquitas, Maracaibo

Population: 6.264 in census – Regional Health System. 76  HD families identified, 13 families with more than 1 member affected (total current HD manifest individuals = 98). A full census is ongoing through local patient association (Avenhun Zulia). estimated prevalence for at-risk individuals is 1-5% of the total population. Needs:…

Barrio San Luis, Maracaibo

Barrio San Luis is a neighborhood in Maracaibo, Zulia. Of approximately 3100 people living here, 700 are at risk (23%). The prevalence is estimated to be extremely high, perhaps reaching 10% of all people living in this small and confined area near the city of Maracaibo. During our February/March 2013…
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