In Solidarity and Gratitude

In Solidarity and Gratitude

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!

Living on the street with Huntington's

Today’s “life stories” brings us to a very difficult and sad place, but one that unfortunately exists. Many people with Huntington’s end up abandoned on the street. Whether left by their families or due to psychiatric issues that arise from the disease itself, young HD affected persons sometimes end up living on the streets. The combination of abandonment, poverty and disease, when mixed with crime, can have devastating consequences. Recently, I received a call from Sonia Moreno from Medellin. She was crying. She mentioned that she was contacted by one of the Caritas centers in Medellin because they had found one HD patient who had been severely beaten on the streets. Lets call him “G”. He had been missing for 3 years, and was in really bad shape. She asked to see if Factor-H could help pay for clothes and gifts. Sonia had seen him grow up as a child, and now she had to see him in such a condition. She cried of sadness and frustration, and kept repeating she would not allow for him to go back to living on the streets. He won’t. G’s mother died of HD when she was 48. After she died, one of her sons went to live with an uncle, and G went to live with his dad. His life was hard, and G started using drugs and had no medical care. When his brother started getting sick, he too went to live with G and their dad. G’s father died in violent circumstances and therefore both kids ended up without any parental support. G’s brother ended up on the street at age 21, although he finally was moved to a care center, where he is still there today. G has spent more or less 15 years living on and off on the streets, several of them with Huntington’s. He is now 29, and since Sonia went to see him in the hospital, she found a municipal care center for him to be taken care of.  Right now he is getting medical assistance, good nutrition, and therapy. Sonia visits him periodically. Her cries of frustration and sadness have a lot to do with the fact that she saw G grow up, his mother die, and his life becoming unsufferable, but they are also a desperate scream about how we, as societies, treat those most in need. No one should die on the streets, least of all a young person suffering from Huntington’s. G represents the untold stories of many young people affected by HD. Ignored by society and victims of the ravaging effects of HD in families. We can’t stand in silence and let them die in abandonment and neglect. We can and will do better.

PLEASE DONATE TO HABITAT FOR HUMANITY HD PROJECT IN COLOMBIA!

  NOV 06 2013 PLEASE CONSIDER MAKING A DONATION. Habitat for humanity and Factor-H, my other ‘job’, started a collaboration together with the Colombian family association (AcolpEH), to raise funds for patients living in suboptimal conditions in Colombia. Find the link here: http://share.habitat.org/fighting-huntingtons We are very behind, and we need…
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