- To enhance the quality of life of people in Latin America affected by Huntington’s disease
- To increase awareness at the local level of the communities most affected by Huntington’s disease
- To mobilize local communities and local youth to provide social and medical assistance to affected populations
- To fundraise and publicize the needs of the affected communities
- To influence legislative issues and facilitate access to government assistance through local governance
What is Factor-H
- A not-for-profit social project to increase awareness about people living with and affected by Huntington’s disease, and to facilitate humanitarian and medical aid to diminish the suffering of local communities in Latin America.
- An effort to unite socially minded individuals through creative journalistic, artistic, medical, scientific, and political means to eliminate the suffering of those affected by genetic disorders and Huntington’s disease specifically.
- A movement born in order to mobilize youth in Latin America, and to change the neglect and suffering of those affected by genetic conditions and poverty.
- A way of bringing a smile, a friendly hand, and a sense of hope to those in desperate need of help.
Huntington’s disease is a genetic, progressive and fatal neurodegenerative disease. It affects people with a worldwide prevalence of 0.5-1 per 10,000 people. The disease is caused by mutations in a single gene, called Huntingtin, and the penetrance of the mutation is 100%. Huntington’s disease does not discriminate based on ethnicity or gender. It advances slowly, but relentlessly. The progression of the disease is variable depending on the type of mutation one inherits. Although less common than the adult-onset Huntington’s disease, a juvenile form of the disease exists, and it is rather prevalent in many Latin American communities. Today, a person born with Huntingtin mutations will die from Huntington’s disease if she or he lives long enough.
Latin America holds a special place in the scientific history of HD. In 1993 an international effort first identified the mutations causing Huntington’s disease in the large number of related, affected people living in the Maracaibo region of Venezuela. Unfortunately, despite the many years since the discovery of the gene, the quality of life of affected people in Venezuela and elsewhere has changed very little. It is out of this fact and out of a desire to help these affected communities, that the concept behind ‘Factor_H’ was born. Huntington’s disease is highly prevalent across many communities in Latin America. Geographical isolation and the individual histories of these communities have contributed to a prevalence of the disease that in some cases is 500-1,000 times higher than in other regions. The consequences of this high prevalence, and the poverty conditions in which these communities exist, have led to a situation that requires immediate attention. Poverty, ignorance and disease are a terrible combination that leads to inadequate healthcare, nutrition and living conditions. Juvenile Huntington’s disease cases are abundant, and in many instances entire families are unable to care for themselves because so many of the family members are affected.
Factor_H is a project that aims to address the medical and social issues that most hurt people affected by Huntington’s disease in Latin America by raising awareness, mobilizing communities, and providing infrastructure to help these communities grow with dignity and hope.
A person with special needs requires special attention.
Factor-H aims to raise awareness and aid so that one day that special attention may be provided on a regular basis; so that people affected with Huntington’s disease can live productively and with dignity in an environment of respect, care and love.
FACTOR-H projects and sources of funding.
Please note that Factor-H is not an NGO – it is simply a project. We are not a registered organization.
Individual contributions for specific projects are handled by associated NGOs or via direct collection at Go Fund Me (Kids Project).
WHAT WE'VE ACHIEVED since 2012
- Launched Factor-H in 2012 in Mendoza, Argentina, with a tango show to benefit affected families.
- Visited communities in Colombia (Magdalena State, Juan de Acosta, Barranquilla, Bogotá, Medellín, Chocó), Brazil (Feira Grande) and Venezuela (Barranquitas, San Luis in Maracaibo) in 2012-2013.
- Established working relationships with local and national patient associations and neurologists/social workers in Venezuela, Colombia, Brazil, and Peru.
- We regularly give seminars in Colombia, Venezuela, Chile, and Argentina to local health authorities and local folks, as well as in the large local universities, to inform of Factor-H objectives and raise awareness about the disease.
- Presented Factor-H objectives at HD conferences, to raise awareness (world conference in Rio de Janeiro, Brazil, 2013.
- Accessed patient lists in Colombia and Venezuela as part of the interactions with the local and national patient associations. The patient associations in Colombia have a current list including over 700 nuclear families with HD: AcolpEH (200 families), Funcovulc (574 families), and Juan de Acosta association (33 families). In Venezuela, Avehun has a list of 1200 families. These lists are critical to alert the national and regional health authorities to public health issues and the needs of the patients.
- Defined local and national needs to improve medical care and quality of life for the patients and the communities in which they reside. Started a dialogue with clinicians and the National Institutes of Health in Colombia.
- Organized shipment of clothes (>$15k) to the communities in Colombia from Los Angeles, via a collaboration with a Colombian NGO, Conexion Colombia (www.conexioncolombia.com), and DHL.
- Delivered clothes and food to affected communities in Venezuela, through a collaboration with Avehun, the Venezuelan association. Visited Casa Hogar and established contacts at all levels in San Luis and Barranquitas, the two largest clusters around Lake Maracaibo (politicians, local ambulatory personnel, physicians, psychologists, social workers, and families).
- Established a collaborative project with Habitat for Humanity (www.habitat.org) to build/renovate housing for affected families in Colombia. Housing needs remains a top priority for Factor-H as families desperately need better housing conditions.
- We renovated an affected family’s home in Medellin (Colombia). See http://share.habitat.org/fighting-huntingtons. Individual donations funded the project, which raised close to US $10,000. Four other families’ homes were evaluated by Habitat and construction budgets generated.
- In 2015, we organized a second concert in Buenos Aires (Argentina) with famous Latin American musician Leon Gieco. At the event, attended by over 400 people, we met the Minister of Health and the Minister of anti-discrimination. The money raised by the concert tickets was used to renovate a home for some children affected with juvenile HD in Buenos Aires.
- We funded the generation of audiovisual material to educate the local populations (most of whom are illiterate) about patient care, through AcolpEH (a Colombian association). Thus far we have produced videos on nutritional care, dental care, rehabilitation program, and others are being conceived.
- In 2016, we started our own program to sponsor children living with HD in Northeast Colombia (Project Abrazos). Thus far, we have raised over $40,000 from individual donations. This is meant to be an annual campaign to support children’s needs in impoverished communities.
- In 2016 alone, we delivered food and goods to over 45 families during the last 2 week trip. We also have provided continued access to food for 23 poor families in other parts of Colombia. We established an ongoing collaboration with a supermarket to provide food donations (via AcolpEH in Bogota). In this program, families get a ‘top-u card’ which we pay for, and which can be used by the family at the supermarkets throughout the country.
- We started discussions with the Venezuelan groups working in San Luis (Maracaibo) and defined a set of areas of need for external investment, including building a day-center for children, and working to expand access to computers at the local clinic and school. We need funding for these activities.
- To increase awareness of the issues facing these communities, publication strategies are critical. Published the following article in Nature magazine: Ignacio Munoz-Sanjuan (2016) Support communities involved in disease studies. See news section.
- In 2016, I took with me a journalist from The Guardian (Dara Mohammadi). He spent two weeks with me in Colombia, and an article appeared in The Standard (Sunday magazine of The Guardian) on May 15, 2016, where Factor-H and I are featured prominently. See news section.
- In December 2016, we organized the first medical mission in Magdalena State, together with Funcovulc. Pharmacists from USC in Los Angeles, and neurologist Michael Orth from Germany accompanied us. We saw over 300 patients including many HD affected individuals. All children had parasites. This experience made us acutely aware of the need to enable regular medical attention to the entire region.
- We organized the historic audience with Pope Francis in Rome on May 18, 2017. Factor-H identified the families, organized the event as part of the HDdennomore campaign, and traveled with the families to Rome.
- Factor-H is working on plans to create two 'HD sustainable communities' in Barranquitas (Maracaibo) and El Dificl (Colombia) with two international NGOs. When implemented, they will be the first community development projects centered on two of the largest HD populations in the world.