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SECOND YEAR OF PROJECT ABRAZOS

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Project Abrazos is in its second year! Thank you!

The program was a big success in 2016 and we now embark in the second year of activities with the 40 children we have sponsored in Colombia.

I  am a neuroscientist working in Los Angeles to develop treatments for HD. In my spare time I oversee various humanitarian campaigns - working closely with local patient associations. All donations go directly to the local Associations and to the children and families most affected by poverty and the disease.

Together wiht Funcovulc and Fundacion Zulia  we are continuing to work wiht children at risk for HD living in poverty conditions.

This year, we are trying to raise more funds so that we can ensure all kids have access to computers or tablets for school. We are also planning to expand the program to children affected by Huntington's disease in other needy communities. Our goal is to have these two groups meet each other in the future. All the proceeds go entirely to the families and all volunteers do this work out of care and solidarity. Nobody receives any compensation for their work.

We will continue with the program objectives, although we are dividing our efforts into 2 parallel tracks:

1. For kids 12 and under - we will continue as is and provide support in the form of clothes, school supplies, nutritional support, access to doctors and dentists, and for them to experience new things when we meet twice a year.

2. For kids over 13 - we are starting a new effort to provide tailored aid for them, either in the form of professional training so that they can learn a task and get out of poverty, or to support them in their educational aspirations by paying for their school as they get older.

Below is an update of our work on 2016...


For Christmas in Decemeber 2016, all the kids got bycicles. Many of them have to walk to school for long distances and the bikes are a great help in the most rural communities.


Olver receiving his bycicle. Olver is a very special boy from San Angel. When we met Olver, he was not very social and hid away from the rest of the group. He was the only child who did not interact with others and did not want to swim. However, Olver was always hungry and food was a way to reach him... Now Olver is happy, has made friends and even dances!


Some of the beautiful girls in the program with the new dresses they received as gifts in June 2016. Many of the older kids already have to step in and take care of their younger siblings because their mothers start neglecting them, probably due to the disease, which often times manifests itself in apathy and lack of care. The parents do not have money to buy dresses for the girls, and we found out how much they like to dress nicely!


A big part of our program is to be able to provide regular access to dental and medical care. All the kids are undernourished and small for their age. We arrange for volunteer doctors and dentists to come join us at our two annual gatherings. This image was from our first get-together in Santa Marta, June 2016. The parents must agree as well as part of the agreement with Factor-H to ensure the kids see doctors quarterly. Funcovulc ensures the families take the kids to get regular check-ups whenever possible.


Most of the kids did not own a tooth brush and had never seen a dentist. Here we see our friend volunteer dentist cleaning their teeth in Santa Marta, June 2016. They all got lessons on how to brush properly (mothers included!)


Cristian is also a special boy for me. When he came in December 2016, we noticed he had a lazy eye and that he had not been seen by an oftalmologist. We took him to see one and he got a patch and a set of glasses for the first time. Last time I saw him in May 2017, he was doing much better!


Part of our mission is to help these children at risk for HD to grow up feeling supported and part of a community who understands their needs and issues. Kids growing up in poor HD families experience a lot of issues - many of the kids in the program have mothers with early stage symptoms, and many of their fathers abandoned them. Some have behavioral issues and we try to get to know them and councel them. This time around, a few psychologists from local Universities are coming to work with us.


But at the end, a lot of this work aims to make sure the kids can have a more normal childhood! So many of them lack the types of experiences we took for granted as children. Going to the beach, swimming, seeing aquariums, going to the movies.... all of these are things they just experienced for their first time thanks to this program.

From the bottom of my heart... and theirs... thank you for your support!

nacho

See more information at https://factor-h.org/kids-project/


Organizer

Ignacio Munoz-Sanjuan
Organizer
Los Angeles, CA

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