Visiting Colombia after the pandemic

Finally the Factor-H team got together in Colombia in April 2022, after a hiatus of two and a half years. During the trip, Ignacio Muñoz and Roger Cachope went to visit the families and kids we support on the Caribbean states, and spent 8 days traveling from town to town meeting several of the families we serve, and organized two large recreational event with the kids of the New Horizons program (114 kids in total). We were accompanied by our staff, Arnel Arroyo Diaz, Leyla Mieles and Zuleima Bonilla, and our guest Dimitri Poffe, who is traveling all of Latin America (from Mexico to Argentina) by bicycle, raising funds and awareness about HD.

This was Dimitri’s first trip to the communities we serve, and his experience has been detailed in his social media accounts: www.exploreforhuntington.com and on https://www.instagram.com/exploreforhuntington/

We also held several meetings with our local university collaborators from the Universidad Metropolitana (UniMetro)in Barranquilla and the Universidad Area Andina in Valledupar. These two collaborations are taking shape and through their volunteer departments, we are strengthening our work to support HD families. The collaboration with UniMetro involves medical, psychological, dental, and physiotherapy professionals, who will visit families & the kids regularly. In addition, we discussed getting a building donated by the medical school in Barranquilla, where we could hold educational events for the families of Juan de Acosta and Barranquilla. This would be the first on-site location for Factor-H where families could access a day center, managed by the volunteer students and professors, specifically directed to expanding our work for the benefit of these families. More on this point later as we firm up the collaboration. We also spent a day at UniMetro presenting our work with HD research and Factor-H at the medical school.

A big thanks to Carmen Vendano and Gina Diaz from UniMetro for their help in making this collaboration grow!

From Barranquilla and Juan de Acosta, we traveled to Valledupar, high in the mountains, near the Sierra Nevada, where we visited the Universidad AreaAndina, with whom we have a collaboration with their volunteer law department. Here, students and law professors have agreed to represent the many families whose rights of access to adequate health and medications for HD have not been fulfilled. one of the consequences of the way the Colombian health plans are structured is that, in some instances, insurance companies do not fulfill their obligations and patients do not get the proper medical care. The collaboration aims to represent these families and ensure the patients will access all the benefits that they have rights to under Colombian law. We also met with the directors of the medical school, who want to also assist local families in the region. Thanks to Yenny Coronado from AreaAndina for driving this program forward!

We also met with the directors of another non-profit organization whose aim is to promote employment and entrepreneurship, Asconsar, with whom we hope to start working to expand our micro financing program and to include more women and youth to become financially independent.

Finally, the most important part of the trip is to visit families in their homes. We took this opportunity to take Dimitri to meet many of the families who are struggling – because of lack of support and poverty. We also visited some families (18 in total, all related) we identified in the town of Algarrobo, families who we started supporting only 3 years ago, and that Roger and Ignacio had never visited before. Below are some pictures that show why visiting them is so important for us to understand their needs and be able to meet them. Seeing the conditions of their homes allow us to plan. For example, most of these families need new home or new bathrooms with showers. It is always difficult to see how many of these patients live, and an integral part of our job.

The families and HD-affected individuals are always grateful to see us. It seems like a small thing, but holding our friends’ hands and sitting down to talk with them is one of the most meaningful things we can do – to let them know we care, and that we are here for them!

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