On July 19, Factor H hosted a Medical Outreach event in San Luis, Venezuela, for people living with Huntington’s disease and those at risk of developing it. More than 100 individuals received comprehensive care—something that would not have been possible without the incredible commitment of 40 volunteers and partners.
The next event, scheduled for October 2025, will expand to include psychological support and genetic counseling for families affected by Huntington’s.
To volunteer or support us with a donation, visit www.factor-h.org.
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!
Happy New Year 2018!
On Monday December 11th, we held an all-day meeting in the offices of Fundacion Habitat Luz, a Maracaibo, University-based NGO that focuses on community development programs. This Foundation has been conducting work in Maracaibo for 20 years. Factor-H organized the first meeting between professionals of Fundacion Habitat Luz and the two HD associations working in Maracaibo – Fundacion Huntington Zulia (centered in Barranquitas, the largest cluster of HD in the world), and Fundacion Amigos Huntington, recently formed in San Luis (San Francisco municipality). Several professors, architects, engineers and economists from Fundacion Habitat Luz attended the meeting and presented their ideas for how to improve these two communities. The acting director of Fundacion Habitat Luz is a very talented and committed architect who is very committed to working with us to help these families. Her name is Marina Gonzalez de Kauffman, and we have quickly become friends. Her vision, and that of her team, will be instrumental in implementing our goals for helping those communities.
Marina and the Foundation had actually done a lot of work in the early 2000s in a project funded by Shell (a company that used to have a big investment in the oil fields found in Maracaibo Lake). In this project, they mapped out the entire town and defined areas for intervention. Most of the HD families are extremely poor, live in corrugated steel ‘homes’ without running water, and in occupied land, which is subject to floods and black water issues, as the entire town does not have proper sewage systems in place. The work that they did then will now be updated and we will work to define priorities for the community. This includes building a community center (with showers and bathrooms and children’s play areas) as well as spaces to hold meetings. The next step is for the Fundacion to hold a first visit to Barranquitas, together with Fundacion Zulia, and to hold meetings with the affected families to start canvassing their views.
In San Luis, the first visit to speak with the community is planning for January 11. Recently, a new association got started there, funded by young people from affected families. This is a big development for this town and I can say that the meeting with Pope Francis and our visit there was a catalyst to get these young people motivated to ACT. The association is run by 6 people from the community, all from affected families, and they are extremely motivated to help. Factor-H has decided to help them financially and they will act as the main link to the families in this cluster. Edinson Soto and Argenis Gotera are two of the Foundation’s leaders – and we have formed a very close relationship already.
The reality is that the situation in Venezuela in general, and in particular for these communities, is very dire. It is hard to describe in words, so i have added a few pictures below so you can see how some of the patients live. Many don’t have any food or medicines, no beds to sleep on, and no electricity. Many patients roam the streets looking for food, and they can get into a lot of trouble. One of the patients we brought to Rome to be blessed by Pope Francis, for instance, was severely beaten up because she has been showing aggressive symptoms. Life is tough in these communities, and we hope we can bring some relief, and a long-term strategy, by teaming up with professionals who have shown an interest in working with us.
Where is all the money for these community-development project coming from?
Well, since the Pope audience in Rome, we have been very fortunate and Factor-H received some very significant donations thanks to the efforts of our friend and colleague Dr. Elena Cattaneo. The funds will be directed mostly to help these two very special communities who played such a large role in the cloning of the Huntingtin gene in the 80’s an 90’s. All in all, 2018 is going to be a very significant year for Factor-H, and hopefully, for all Venezuelan patients.
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