Gathering of the kids in Barranquilla in July 2018 - first time they met with clinicians and scientists!

The children of Project Abrazos from the states of Atlántico and Magdalena got together for our fifth gathering, this time within the framework of the first Latin American scientific, medical and social conference. The 40 kids met for the first time some of their sponsors as well as other clinicians and scientists working to improve the care of HD patients. They joined us on the last day of the conference, stayed with the rest of us in the Hilton Garden Inn, and spent 3 days doing activities together. The children also interacted with the youth at-risk family members coming together for the first time for the HDYO gathering. This was the first time Factor-H integrated the kids project with our colleagues working together in the areas of community development and medical care. It was an unforgettable few days. During the visit, they also received a lot of gifts from their sponsors, and their friends coming from Italy and Switzerland!

Many of them were also seen by expert physicians during our medical assistance day that took place in Juan de Acosta, the largest community afflicted with HD in Colombia. The program is progressing nicely, and together we have made a pledge to extend our financial assistance to enable them to get a better education and to improve the quality of life of their families through community development programs. Activities included a visit to the historic colonial city of Cartagena de Indias, the first time they visited this beautiful city. the kids spent the day with our friends visiting from Europe, North America and all over Latin America.


Third year of project abrazos is underway in colombia & venezuela

The third year summer gathering of the Colombian kids sponsored by Factor-H (37 in total in Colombia alone) are getting together in Barranquilla on July 8-11th. Along with the usual recreational activities, we are also uniting them with visiting clinicians, scientists and young HD family members from 7 different Latin American countries, in the largest gathering of Latin American patient associations ever. You can read more information about this meeting on our "Events" section.

This year, Project Abrazos has increased its area of influence in two significant ways.

In Colombia, Factor-H now supports a full-time staff member whose main responsibility is to care for our sponsored kids. Carlos Arnel works in close collaboration with Funcovulc, the local HD association based in El Dificil, Magdalena State. He regularly visits the children, ensures they have adequate access to food and water, and that they go to school. We are in the process of ensuring continued education as their local school is inadequate and some of the young children still do not know how to read.

We are also providing cell phones for the parents to ensure continued communication, so that we can best help as their needs evolve.

In several instances, we have had to relocate children due to mistreatment at home and we are providing extra support for those kids by covering their living expenses.

In addition, we have expanded the program to Maracaibo, where we now sponsor 10 children at risk for HD. Given the large numbers of at risk children in the Venezuelan communities, we are working closely with our local partners there, coordinated via the Fundacion Habitat LUZ (associated with the University of Zulia), so that we can begin educational and recreational activities for kids at the community level. Plans are being drawn to start arts classes, sports activities, and teaching workshops so that we can reach more children. Several extrenely poor kids have been included in the program and we have covered their education costs at the local school in San Luis.

Together we can continue to make a difference. Donations will be sought soon after our meeting this July. Please contact us if you want to learn more or get involved. We need your help ... they need your help!


Fourth gathering of project abrazos in maracaibo and barranquilla

December 2017 will be remembered very fondly for our efforts. For the first time, we included children at risk for Huntington's and living in extreme poverty in Maracaibo. A few kids from Barranquitas and San Luis (the two largest HD clusters in the world) in Maracaibo are now part of the regular Project Abrazos program. In addition, we held two large Christmas parties organized with the local patient associations: Fundacion Amigos Huntington in San Luis, and Fundacion Huntington's Zulia in Barranquitas. We provided gifts, food, and entertainment to over 300 children, all at risk for HD.

We wanted to bring them a message of hope and celebration. we wanted the kids to be kids and to forget, albeit momentarily, the difficulties they face daily. They played, they danced, they laughed, and they were happy!

We also organized additional events during my visit to Maracaibo, which you can see in the pictures. A local group of young physicians is getting involved in Maracaibo and they conducted their first visit to San Luis. Access to medicines is very restricted in Venezuela at the moment but we are getting organized to help them.

In Maracaibo we also held meetings with a local NGO called Fundacion Habitat Luz, and architecture and engineering organization who has now teamed up with Factor-H to help in community development projects in Maracaibo.

In Colombia, the local university provided assistance for all the sponsored children. Several needed glasses, all needed dental and medical supervision. Overall, all of the kids in the program are doing much better, and none of them now is malnourished. As you will see from the pictures, they are well integrated with the other kids (this was not so last time we got together) and friendships are flourishing. I feel very proud of what we are accomplishing, and we are making plans to improve our impact in these kids' lives - we are working with the schools to improve care, and considering steps to ensure the teenage kids remain in school and also get additional education so that they can succeed in life.

The program would not be a success were it not for the kind generous donors, and the local associations, who do a wonderful job organizing these important events and gatherings.

One child at a time, one patient at a time, we will change their history, and we will a better world for it.

Merry Christmas!

nacho


Second year of Project Abrazos is here!!

We are about to take the sponsored kids to the beach in Northern Colombia from June 27th through July 2, 2017.

We have done a lot of work this year with 40 children at risk for HD in Colombia, living in poverty conditions. We are now trying to expand the program to include other children from Maracaibo, where the largest populations affected by HD reside. For this, we need additional support.

We have also slightly changed the Project - for kids under 12, things remain the same. For kids over 13, we are starting a Phase 2 program aimed at education and professional training. We acknowledge that one of the best way to help these families get out of poverty and for these children to experience long-lasting benefit, we need to provide them with opportunities for them to be independent and be able to earn a living. So we will be working with local institutions and provide adolescent kids with tailored programs based on their interests and where they live.

The project 'Abrazos' (Hugs) aims to provide donations for children in Colombia living in families affected by HD. Their family situation is dire and many of the kids have been abandoned by one of their parents. Often times, the mothers are early-stage HD and have difficulties caring for the children.

Their families typically do not have any money to buy them clothes or toys, and all of the children lack proper nutrition. Their living conditions are difficult, usually lacking access to fresh water, electricity and living in inadequate housing that floods during the rainy season.  The children we seek to help live in the Magdalena and Atlantico provinces of Northeast Colombia.

Factor-H works with two local Colombian HD non-profit associations who know these families well and will ensure the donation reaches the children (all under 16 years of age) who we have jointly selected for this project.   

This donation will bring them hope, a chance in life, and will go towards paying for school supplies, clothes, and making some of their dreams come true. We will deliver donations twice a year and also give them a birthday and Christmas gift. With additional donations we also organize medical, dental and educational visits regularly. We want to ensure the reality they experience growing up is different from that of their affected parents and relatives. The new generation of HD kids will grow up strong and united!

We are now in our second year and we will be soliciting donations soon. Please click the 'learn more' button below to access the donation page through Go Fund Me. And thank you for your interest in helping!

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