Factor-H has been supporting and working alongside the Peruvian association for several years now. The region of the Cañete province constitutes one of the largest clusters of HD in the world. The association is supporting the needs of 49 families afflicted with HD and a total of 80 patients.
During the month of April, the Peruvian association Familias Huntington Peru, visited the homes of 12 families living in conditions of vulnerability in the municipalities of Cañete and Lunahuaná, a couple of hours’ drive south of the capital Lima. During this event, the association brought clothes, food baskets, diapers and nutritional supplements for the patients.
This is the first visit to these families in 2024; the visit also allows the association to understand the needs of these families, and to communicate with them about ongoing programs to increase medical & physical rehabilitation access, as well as to interact with at-risk youth. Factor-H promotes a level of holistic care that encompasses a close relationship with leading neurologists, educational campaigns for youth and caregivers, as well as recreational activities to bring these families together. The association also assists families with the legal proceedings to access disability support from the Peruvian government for those who qualify. Their work provides a life-line of support for these families, many of whom experience conditions of extreme vulnerability.
Since 2023, the Peruvian association has been working closely with Caritas Peru, extending their support for the families. Professionals affiliated with Caritas are assisting in the areas of occupational therapy, physical rehabilitation classes, and access to psychological support for caregivers and at-risk youth.
Please check out the association YouTube channel for more information of their work HERE
From October 19 to 21, Factor-h organized in Barranquilla, Colombia, the 2022 Huntington Latin American Conference with the presence of 35 speakers among them scientists, researchers, experts in different health fields, HD associations, patients, and families. In his Welcome conference on the 19th, Factor-h’s President and founder, neuroscientist Ignacio Muñoz Sanjuan, presented the guidelines and achievements of the non-profit organization.
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 crisis. The governments of both Colombia and Venezuela have placed their residents on lockdown. Local hospitals and care centers, especially in Venezuela, are not equipped to deal with the imminent disaster. Basic support, already lacking in our affected communities, is even more unattainable during this period of isolation.
As an organization dedicated to improving the health outcomes of underserved and vulnerable populations affected by Huntington’s Disease in Latin America, we are working tirelessly with our local partners to ensure our HD-affected communities are not abandoned while being even more isolated during the lockdown. Because of our team’s unfading dedication, we have been able to:
Purchase and distribute locally-made soaps to 140 families in Venezuela, 50 families in Colombia and 50 families in Perú
Convey official guidance on signs, symptoms, and prevention of COVID-19
Deliver food and basic necessities
Below are some of the photos sent to us by our partners and team on the ground as they distributed bags of food and basic necessities and informed patients in the hardest hit areas in San Luis, Venezuela, and the Colombian Caribbean Coast.
We are immensely grateful for our tenacious team in Colombia and Venezuela and for all of you, our donors. Without your help and dedication, we wouldn’t be able to help the families living with or at high risk for HD in vulnerable communities, who need it now more than ever.
We would like to do a lot more and need immediate support in order to do so. With additional funds, our goal is to provide:
Transportation in Maracaibo and in the Colombian Caribbean Coast to facilitate health care and to bring food, medicine, and basic necessities to the families unable to obtain them for themselves.
Ideally, we would like to purchase a van in each of these regions to assist our communities during this extreme period and in the recovery phase afterward.
Our goal is to raise $40,000 to achieve our goal.
Please help us reach our goal, stay safe and informed.
Thank you!
For the first time, Sonia Moreno, a neuropsychologist from Universidad de Antioquia, an a member of Factor-H team in Colombia, and Nacho visited the families living with Huntington’s disease in Perú. Cañete is a province adjacent to the capital of Perú, Lima. The first HD reports in the Cañete Valley were unveiled by Prof. Cuba in 1983 and the prevalence for the Cañete province was then estimated as 31 cases per 100,000 inhabitants (Cuba JM, Castro C, Benzaquen, M. Sobre la Epidemiología de la Corea de Huntington en el Perú. Rev Neuropsiquiatría 1983;46:114-120), highlighting the fact that this region, which includes several towns, is probably one of the largest clusters of HD families worldwide.
In 1986, Cuba and Torres reported eight families with HD in Cañete (Cuba, JM. A focus of Huntington’s chorea in Peru. Rev Neurol (Paris) 1986;142:151-153). In 1990 they reported 30 HD cases from a single family. This family was one of the 14 families assessed up to then. The authors concluded that the disease had appeared in that family 120-150 years before, to then spread from the Cañete Valley throughout Perú (Cuba JM, Torres L. Estudio de una familia con Corea de Huntington en Cañete. Rev Neuropsiquiatria 1990; 53:94 – 102).
More recently, a paper published jointly by Dr. Michael Hayden and the team of the Neurogenetics institute led by Dr. Pilar Mazzetti, a leading neurologist in Perú, showed that the disease likely had two origins: one of European ancestry, and another of Amerindian ancestry (Kay et al., 2016, European Journal of Medical Genetics). Therefore, for the first time, a local origin of the mutation was identified in Latin America.
We did not know many people from this area. At the Barranquilla conference, Factor-H and HDYO invited the social worker who founded the first Peruvian HD patient association, Esther Candelas, and three youth (one of them with JHD) to participate and meet other HD families from Latin America.
We learned there of the suffering of many families living in this region. Similarly to other large clusters in Colombia or Venezuela, many patients are abandoned by one or both of their parents and other family members, and they receive little institutional support. Therefore we decided to visit some families and assess the situation.
Over the course of 4 days, we saw over 40 patients and traveled through this region with our friends from the Peruvian association and also from the medical team led by Dr. Mazzetti and Dr. Cornejo, the leading HD neurologists in Perú, who graciously allowed us to be part of one of their regular medical visits to the patients and their families. What we found was a community in need, with many people living in extreme poverty. The work that the team of the Neurogenetics Institute in Lima conducts is exemplary. Drs. Mazzetti and Cornejo, along with other neurologists, psychiatrists and other professionals, regularly visits the Cañete families every 3 months.
When we visited, the conducted a 2 day visit, with many families with neurodegenerative conditions arriving at the hospital of Nuevo Imperial, one of the small towns that punctuate this beautiful region, a region marked by the sea and desert dunes, large peaks and wineries making the traditional Pisco liquor. Dr. Mazzetti and her team also visit some families at their house, where they assess the patients who can’t afford to make it to the hospital, and prescribe and provide medication. This is the second example (the first one is the CETRAM institute in Chile) we have seen a leading neurological institute taking the time to conduct these visits regularly (for 2 years now).
It is an example to be followed elsewhere and we remain very grateful to the entire team for allowing us to visit.
Below you can find a couple of videos to see the conditions of some of the houses and what some parts of Cañete look like. We hope to raise enough funds to begin more actively to help these families. In spite of the help they receive from their clinicians, little social support exists to help them financially and many live in desperate conditions. We visited over 40 patients in 3 days of home visits, and saw many cases of JHD. Most of the families we visited need help. We are drafting a plan to bring help to them via our collaboration with the local association and clinicians.
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