GOLD2023

Factor-H

Enhancing the quality of life of HD families living in poverty in Latin America

LOS ANGELES, CA   |  https://factor-h.org/

Mission

Factor-H is a humanitarian nonprofit founded in 2012 and registered in 2018 to enhance the quality of life of families in Latin America affected by Huntington’s disease (HD) and living in poverty. Our mission is to build communities of cared for, resilient and self-sufficient HD families through alliances with local and international organizations. Our vision is to eliminate the suffering of those affected by HD and destitution. We aim to find collaborative ways in various levels to increase awareness and efforts to change the neglect and affliction of the communities where we are engaged.

Ruling year info

2019

Principal Officer

Dr. Ignacio Munoz-Sanjuan

Main address

7917 HOLLYWOOD BLVD

LOS ANGELES, CA 90046 USA

Show more contact info

EIN

82-5395108

NTEE code info

Specifically Named Diseases (G80)

Emergency Assistance (Food, Clothing, Cash) (P60)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Improve access to care with families living with Huntington's disease in Latin America Improve educational opportunities for youth at risk for developing the disease Liaise with government institutions in the countries we work in to ensure improved access to benefits Defend the rights of individuals affected with Huntington's disease

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Basic Needs

The basic needs program aims to provide the most basic form of assistance to vulnerable HD families living in extreme poverty. We assist families in Peru, Colombia and Venezuela by providing sustenance, clothes, shoes, mattresses, cleaning supplies and nutritional supplements for patients. For some families, we try to remediate the lack of access to fresh water and electricity, although thus far these efforts have been limited due to lack of funding.

Our basic needs program also covers health-related programs focused on patients and young children. Several times a year we organize medical and dental assistance days, together with local physicians and volunteer organizations. In Venezuela, we sponsor weekly psychiatry consultations on-site in the San Luis neighborhood, providing specialized care and medications. We place a premium on pediatric care for those children most vulnerable due to malnutrition, particularly prevalent in Barranquitas, Zulia State.

Population(s) Served
Families
Children and youth

We started the Kids’ Project (Project Abrazos) in 2016 to provide a better quality of life for children (between 4-15 years of age) at risk for Huntington's Disease who live in extreme poverty. We are currently supporting 141 kids at-risk for HD between Colombia (41) and Venezuela (100). Participating children receive access to adequate nutrition and consistent medical and dental care, have basic needs covered, such as beds, shoes, clothes, and school supplies and uniforms. Up until the pandemic (and we hope to soon resume), the program also offered bi-annual gatherings with other at-risk youth in order to create a community with common issues and promote a sense of hope and joy.
The kids’ well-being and opportunities in life are significantly enhanced by participating in this program. Some of them have been documented and can be found in a new book project The Stigma of the Caterpillar and can be found at https://factor-h.org/el-estigma-de-la-oruga

Population(s) Served
Children and youth

The health assistance program(s) offers assistance in a range of medical & psychological needs for the populations we serve. The program includes health fairs for the communities, access to medication, access to neurological and psychological assistance for Huntington's disease affected individuals, their caregivers, and children at-risk for the disease. We work with local universities and affiliated health professionals in Colombia, Peru and Venezuela, to provide access to adequate care and nutrition for over 600 families, mostly living in poverty.

Population(s) Served
People of South American descent
People with intellectual disabilities
People with physical disabilities
Chronically ill people
Terminally ill people

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Health area:
Promote a comprehensive, multidisciplinary and timely attention to health
Provide psychological support to at risk population and families with HD
Guarantee genetic counseling programs

Youth area:
Empower future generation to take informed decisions
Reduce inequality to access to education
Promote a healthy and happy child development

Community Development area:
Improvement of housing and environmental conditions
Increase the capacities to become economically self-sufficient
Generate and maintain a sense of belonging and mutual support

Advocacy area:
Characterize the socioeconomic situation and access to health services
Reach the recognition and full enjoyment of rights
Establish strategies for a unified approach and treatment in Latin America

Working with a variety of local and international institutions we support the programs in the 4 key areas for Factor-H. We have collaborations with local universities, medical centers, international medical experts, to fulfill our mission. We have characterized the living conditions and needs of over 600 families in Peru, Colombia and Venezuela, affected by Huntington's disease and living in poverty. Our employees working on the ground interact directly with the families and ensure assistance is provided for more than 500 patients and 600 children at-risk for the disease.

With more than 15 employees working full time or part time and a large number of volunteers (>100) including clinicians and psychologists, we can provide access to benefits and information for the families affected.

We have made significant advances in earning the trust of the families, capturing their medical and socio economic information through your own databases, which enables us to tailor our programs based on need and geography. Through multiple partnerships we have expanded the services we provide in education, access to medical care, and in psychological support.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Factor-H
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Factor-H

Board of directors
as of 03/02/2023
SOURCE: Self-reported by organization
Board co-chair

Dr. Ignacio Munoz-Sanjuan

Cajal Neuroscience

Term: 2018 -


Board co-chair

Roger Cachope

CHDI Foundation

Term: 2018 -

Roger Cachope

Jamie Levey

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 12/21/2021
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 02/15/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.