Factor H La Luz Caregivers programme

Factor H

Huntington’s Disease (HD) is a rare, inherited neurogenerative disease (4.88 per 100,000 worldwide). Each child born to a parent with HD has a risk of 50% of inheriting the disease.

The average age of onset is between 30 to 50 years of age, a time of the person’s life when they are usually at their most productive and making future decisions important to themselves and their companions and families.

Whilst there is currently no cure, there is an immense international drive towards this. Medication may be able to manage some symptoms. This international drive can be directly linked to some of the most impoverished communities in Latin America, particularly Venezuela.

Barranquitas is a dusty, isolated town which sits on the one of the oldest and largest lakes in South America – Lago Maracaibo.

The impact of chronic underinvestment in the oil pipelines which run under the Lake’s depths as well as the disintegration of waste structures which spill into it has led to a toxicity in its once productive fishing waters leading many of its population to seek employment through other means. Perhaps not so unusual you might think but there’s a unique aspect to Barranquitas. Many of the fisherman and their families have or at risk of Huntington’s Disease (HD). Indeed, Barranquitas is one of a cluster of towns and townships within the State of Zulia in Venezuela and is home to the largest population of people with Huntington’s Disease (HD) in the world. Whilst there are no ‘official’ statistics, Habitat Luz, the local NGO estimate it to be between 10 to 15% which in town the size of Barranquitas (who had 5000 people in the last census), means that there maybe 750 people with HD.

Barranquitas and the townships’ people provided the pedigrees which led to the discovery of the HD gene which contributes to the illness but also led to the mapping of the human genome and development of modern gene therapies applicable to many other diseases.

Whilst the ‘work’ that the caregivers of the town undertake reflects the relentlessness of care throughout the world; the nature of HD as a genetic disorder means that many of the caregivers, just like the fishermen, either have or are at risk of the illness themselves which may develop at any time from childhood through to middle age and beyond.

La Luz means The Light. It takes it’s name from the cry that goes up when the electricity turns back on after one of the many and daily blackouts that the country experiences. The caregivers have formed the foundations of Barranquitas and are literally La Luz of the town, but with the increasing instability in the country, they need greater support to be able to continue to do this. La Luz makes their invisible work visible. The Caregivers Project is its infancy but is about supporting the caregiving community by listening to their needs whether its education, equipment, skills, employment or therapy.

In harmony with the humanitarian and medical strands of Factor H and their local partner Habitat Luz, La Luz will provide an innovative programme for the caregivers by being community centric, using existing partnerships with minimal cost in a space/place where this does not currently exist. 

It will:

Offer healthcare advice and basic provision of healthcare to caregivers (this includes therapeutic intervention such as psychology). If caregivers develop signs of HD – they will be seen by the medical team from Factor H (on 3 monthly outpatient visits (a programme which is already in place)

Caregivers will be trained in caregiving skills such as manual handling (either face to face/or through a video interface on a mobile device) and first aid

Caregivers will be provided with basic manual handling equipment to minimize injury to themselves and those they care for. In some cases, these will be produced using local products. 

Caregivers will be facilitated (through other aspects of the Factor H (and local partner Habitat Luz)) to access support with producing identity documents and access to education/training opportunities

Caregivers will be supported with a small initial grant to set up employment opportunities. Options for microfinance is to be looked at in the future

A roving caregiving team (paid) has been set up but will be developed further to look after the care, nutrition and hygiene needs of people with HD who have no caregivers/or that have become homeless. This team will also support caregivers who have injury or where those they care for are now difficult to care for physically.

Whilst there is a small office which serves as an administrative/contact point for the community, a larger property which serves as a community hub (i.e. where education can take place/laundry and showers for the homeless) is being sourced.

Everyday caregivers of people with HD in Venezuela often place their own health, needs and dreams secondary to those their care for. Additionally, and uniquely, caregivers of people with HD may often be at risk of the illness themselves.

Caught in a geopolitical landscape not of their own making which means they do not have access to any welfare or consistent healthcare, they are often tempted to make the treacherous journey out of their homeland like 7 million of their countrymen leaving those more affected or older with no care (several of the HD community are homeless).

Many of the older caregivers cannot read or write and some young caregivers may not be able to go to school. There are minimal employment opportunities.

The Caregivers Project is its infancy but is about supporting the caregiving community by listening to their needs whether its education, equipment, skills, employment or therapy.

The Caregivers Project recognises the importance of this community and by offering this support in the form of opportunity and therefore empowerment is hoping to stem the tide of migration.

Factor H works in collaboration with a local partner Habitat Luz. They run a 3 monthly outpatient clinic (using public spaces and a mix of volunteers and paid staff) in the towns affected. Home visits are by negotiation with a Factor H employed Social Worker. Food parcels are also given out at the clinics. Until recently the focus of the project was individuals with HD with caregivers collecting a set number of diapers or acting as proxy reports for those who cannot communicate.

A Caregiving education programme was drafted last year by a visiting (volunteer) UK Occupational Therapist (OT); but its launch was bought forward in Barranquitas after a vulnerable man with HD was left to die. There is no oversight by police or safeguarding measures in the town. Therefore, a short caregiving education was delivered, and the roving care team formed. Paid, they each visit 4 people a day or double up as needed. For the paid caregivers they are no longer in debt (seeking credit for food or other goods), they love their work and feel listened to and valued. For those they care for, the signs of their wellbeing have improved.

Equipment (which cannot be sourced outside of the country due to current government policy) was bought in by the OT and will be replicated locally to minimize caregiver injury and cared for injury (such as problems with pressure ulcers). It has to be carried and cannot rely on electricity.

An older caregiver who has arthritis and injured her knees in lifting her husband has now received education on why it happened and a personal care plan including knee supports. She is in less pain and can now walk to church which she desperately missed. She is supported in bathing her husband by the roving care team. 

At the current time, there is no statutory provision of health or social care for the HD communities from their government. Factor H and Habitat Luz provide this. The Caregivers programme moves this work from provision to supporting the community through recognition and development to growth. This will in turn improve the holistic care of the HD families.

Additionally, the local Team in Barranquitas alongside a Venezuelan Film Maker and the UK OT have just finished filming a documentary about the lives of two caregivers to be shown at an International HD conference in Europe in September 2024. This is because much of the information about HD is very Western centric so audiences who engage with the project need to understand their physical, emotional and cultural landscape.

The film will be used to raise funds towards the Caregivers project but also in an era of hope for change in HD treatment as well as potential political change in Venezuela, allow for new conversations to be opened about how by improving the conditions in these communities it will allow them to take part in research and receive the treatments which their families helped to build. 

Financial support/and guidance - to establish the Caregivers programme and provide access to expertise as to how to raise sustainable investment in its future

Technical, legal and market barriers - to seek support/advice in a difficult geopolitical landscape (i.e. tendering for property/or bringing equipment into the country at scale)

Cultural - to reach audiences beyond the HD community

Factor H partnered with a local Foundation Habitat Luz in late 2018. Habitat has been working with disadvantaged communities in the region of Maracaibo for over 20 years but since 2018, their main project has now become the welfare of the HD communities. They have also created strong links with the HD Family Organisations of the Zulia Region and countrywide.

Whilst the founder of Factor H is based outside of Venezuela, he is of Spanish origin and visits the Region (as well as other countries within South America) at least twice yearly and meets with the Habitat Luz Team Manager weekly (via video link). She in turn coordinates the locality Teams which include Volunteer Neurologists, a paid GP and three paid Social Workers (the latter three from Factor H funds). One of the Social Workers is based in Barranquitas. 

In Barranquitas, Factor H has 3 local community based and paid ‘fixers’ whose knowledge, relationships and advocacy for the work are invaluable. Habitaz Luz and Factor H always seek guidance from them with regards to any new projects. This is the same for the Caregivers project. This is important as the HD communities felt used and abandoned by previous outside agencies and so trust is hard won. In addition the localness of work is undertaken sensitively due to the presence of government representatives and other factions who may feel criticised. 

6 month impact goals (short term indicators):

 - complete recruitment to roving caregivers team (currently 2, needs 4)

- investment and delivery of equipment for caregiving team (inc. purchase of materials and secure storage)

- start a small grantgiving program for caregivers (to facilitate travel, training or setting up of a business)

- secure community hub and complete adaptations (inc security, funding a caretaker, accessible shower). Design timetable/memorandum for use

- deliver care giver training / as well as first aid training (with Venezuelan Red Cross) to caregivers and to engaged families

REVIEW

12 month impact goals (short to medium term indicators):

- from care giver training, establish a train the trainer approach and caregivers meetings 

- through caregivers meetings and HD family education (in collaboration with local church who support those women and children subject to domestic abuse), identify those caregivers who need 1:1 psychological support (a volunteer psychologist has been found)

- explore psychological training with psychologist (in line with the Friendship Bench initiative in Africa in which community elders are trained to deliver wellbeing support)

- Start programme of microfinance training through Habitat Luz links to Maracaibo Universities

REVIEW

Five year impact goals:

- Microfinance initiation embedded within La Luz

- HD education for professionals within Venezuela

 - Creating fellowships for visiting professionals

- Conversations with research organisations such as Enroll HD so that communities can take part in research

- Purchase of Casa Dignidad (palliative and nursing care space for people with HD)

The theory of change is based around a model of emphasis on relational infrastructure in that the building of relationships is central and thereafter the project empowers those in that relationship. Therefore the relationships are considered as an example of outcomes and following on from that logical links. 

i.e. In Barranquitas, the Lead Caregiver of the roving team was a member of the community who was dismissive of the Factor H/Habitat Luz work but by engaging with her she has shared her wisdom and is now central to the next stages of our project. She can be seen in the trailer in the elevator pitch subsection taking about her own experience but also looking after one of the homeless with HD. In addition to working as one of the caregivers and being a caregiver herself (she has a family of 13 within her home and cared for her Mum who had HD), she wishes to own her own tequeno business so she (and not others) can look after her family. A grant from the caregivers pathway will facilitate this. Our community hub will let her use the kitchen for the business. Her son is keen to go to University and grants from other programme strands within Factor H may allow for that. These are her words which she wrote for us after completing the filming with her: 

"First of all, I thank God for being who I am and God has given me the joy of being a mother because it is the most beautiful thing that God has given and that measures the strength to continue to believe. The day that I leave you (her family) I want to prepare for so that you do not suffer, I want you to be independent and that you have a future ahead of you that you can have a better life, those are my dreams". Mariebella, 31.

Whilst HD is probably one of the most awful diseases known to man, the community in Barranquitas have demonstrated they wish to be known as 'needed rather than needy' (ref Cormac Russell, 2024) and have meaningful roles in promoting their own health as well as the wider community. HD in this community is more than a medical challenge, it is a social and political condition too. 

1 Factor H Lead / 1 Habitaz Luz Lead

5 Full Time (organisational/admin) and 1 Part Time in Habitat Luz (Maracaibo office)

3 Part Time Fixers, 1 Social Worker - Barranquitas

1 (paid) Film Maker - Caracas

1 (volunteer) OT - UK/travels to Venezuela up to 4 times yearly (planned)

9 months

The Team Lead of Habitat Luz is an architect by background and other members are teachers and engineers. The Factor H Lead is a neuroscientist who has worked and formed networks within the HD scientific community. The Barranquitas fixers are from 'pescado' (a Fishermen family), a HD family and a Wayuu family (Indigenous peoples of the Region). The volunteer OT works is a specialist HD OT.  Our Film Maker is from Caracas but has known the Barranquitas community since 2018. They are all passionate advocates for the HD community in this Region and worldwide. 

There are a number of members across the Teams who are neurodiverse and who are also physically disabled. 

Each member brings value, creativity and a strong sense of compassion and social justice to the project.

The current business model for Factor H is generating income from corporate donors, heartfelt connectors, grant applications and fund raising (i.e. Donorsee)

La Luz will follow this model initially and if awarded the Amigen Prize (or other), this will provide a stable foundation for the project including plans for income generation (i.e. microfinance for caregivers). Please see theory of change example, previous plan of what is within the programme and income generation below.

La Luz will follow the same business model (as Factor H) but will also sell the services of the main Lead (a UK based OT) through charging for giving webinars to organisations she already knows and creating networks/contacts from this initial work. Through this work (in the last 3 months) she has managed to fund the initial outlay for the caregivers documentary. She continues to receive donations for the post production as well as a downpayment for the community hub. The final documentary will be used to raise further income from pharmaceutical companies (who are developing HD therapies) but also educational establishments. The documentary/and ongoing work associated with it will be entered into filmmaking competitions and festivals. 

If awarded the Amigen prize (or other), this would allow for a stable foundation for the latter plans