For communication please contact Ignacio Munoz-Sanjuan at firstname.lastname@example.org
- 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.
A project sprung from a desire of physicians, scientists, musicians, affected and unaffected people to change the lives of those suffering from Huntington’s disease and other rare genetic disorders.
Introduction to the problem
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 genetic condition renders one unable to change one’s fate; it should not condemn someone to a life without 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 INITIAL OBJECTIVES
Evaluate medical needs and raise funds/medicines to improve medical care in the affected communities
- Census of patients’ location, family structure, clinical background/patient; generate a database of clinical records that would be compatible with generating epidemiology and observational data to support medical research to generate improvements in health practice and interventions.
- Inventory of what is needed – vaccines, medications (HD and general); Factor-H to work with Unicef, WHO, or pharmaceutical companies to get medicines for free for affected people.
- Identification of local physicians and care workers – training for improving medical care.
- Establish a Latin American web- or mobile phone-based network to connect the caregivers and doctors to share practices, experiences, etc.
Infrastructure goals – requires coordination with local authorities
- Water/sewage treatment plans – in coordination with Engineers without Borders (discussions in progress); requires understanding of existing water usage practices, local environment, etc. Currently gathering information and writing proposals.
- Housing: improve living conditions, schools, hospices – in coordination with Habitat for Humanity (discussions in progress). Currently identifying individual families in need of housing improvements and writing proposals.
- Other needs (to be determined) – child education, prostitution, employment options, etc. (potentially in coordination with Mercy Corps – contacts initiated)
- Provide food, clothing, toys for kids, mattresses, blankets, wheelchairs etc (to be defined in coordination with local caregivers). Requesting donations via wire transfer through the International Huntington Association (see Donate tab).