you
(A donor, a volunteer, a friend)
YOU, you are the heart of our organization. We have arms, legs and certainly, many brains, but just one heart: our donors, our volunteers, our friends… any person who helps to spread the word about our mission. YOU too can help.
As a photographer I have been, for several years, addressing and making visible the stories of Huntington's disease patients in Venezuela. I have done this thanks to the collaboration of small local organizations that work with great difficulty on behalf of these communities. But since I met Factor -H I could see their professionalism, dedication, and commitment to help the sick in an environment of total abandonment and precariousness. Factor-H's work has significantly impacted affected communities like never before. I can proudly say that I am a contributor to Factor-H.
“I come from an HD family. One always wants one's family to be well and what better way to support them than by helping organizations like Factor-H, which from the beginning has been a light for all these vulnerable families, in extreme poverty and affected by Huntington's disease, who were lost and hidden from society. One way or another I will always feel a very close bond with someone who is suffering with Huntington's, no matter where they are in the world, because I know everything that the disease brings into a person and a family. I feel happy helping them and hope to do so as much as I can.”
My goal, contributing with Factor-H, is to help to tell the stories of the people Factor-H works with. Artwork can create an interface between that community and the larger world, and serve to help create better understanding and facilitate empathy for those living with Huntington’s. We are working to put a human face on a condition that is only seen as a frightening disease. "
Few people occupy a special place in our lives because they have provided help when we needed it, because they have been there for us during some of the most difficult moments of our lives. This is the case with the people at Factor-H, an organization that has earned the hearts of the people suffering from HD in Venezuela.
Factor-H represents a great deal for all the world families affected by HD.
I often think how different things will be today for those affected by HD in my community and other Latin American communities if Factor-H did not appear in our lives several years ago. Approximately five years ago I had the honor of meeting Ignacio Muñoz, founder of Factor-H. I will be honest with you, when I first met him, it was very hard for me and affected family to “believe” in yet another person whom we had never met, and I thought that he would be just like the “others’ who came and went, never to be seen again in our community.
I say “like the Others” because there was a time when many people would come from various places, came to our community, promised many things, and did not fulfill their promises. So, I thought this will be the same when I met Ignacio.
One day, he told me whether I would accept that my family travel with him and others to Rome to have an audience with Pope Francis, and I did not believe it. Internally, I laughed, and I said to myself, what a lie this is!!
But one day, a red envelop arrived at home, and inside was a letter of invitation to my family, to go to Rome. I could not believe it when I read it, and still I mistrusted it. But soon I realized this was different, that this man was serious, and I said: “this man is not like the others; Ignacio is different”. And soon I came to realize that every promise he made, he fulfilled it. And this is how he earned my affection, my respect, and my trust. He is now a part of my family.
I would even dare to say that Factor-H is the only organization we have interacted with that has helped and continuously contributed to the well-being of families affected by HD in our communities, including during the covid-19 pandemic. My wife Kimberly and myself collaborate with Factor-H.
I am short of words here, our gratitude for Ignacio and the entire team of Factor-H has no comparison. With such gratitude, words fail us!
Factor-H is a meeting place, a place of community, a place of respect and understanding that we are all equal in dignity and rights
As HD researchers, reviewing the programs that Factor-H have implemented to improve the lives of HD-afflicted families in South America is not only inspirational, but a potent reminder to all of us that our help does not, and should not, stop with scientific research.
Vahri and Baljit Khakh
HD RESEARCHERS
It’s difficult for those of us whose families are not directly touched by
Huntington’s Disease to imagine what it’s like to live with it. I can easily imagine, however, that walking your HD road in extreme poverty can only multiply the challenges, exacerbate the losses and steal many of the opportunities to cope that are available to others.
Factor-H operates where Huntington’s and extreme poverty intersect. That’s what’s drawn me to actively helping with that work and its service.
Factor- H is unique in its service to those in the world living with HD and needing assistance with the basic needs that others take for granted. I hope my friends and kindred spirits, within and outside the HD community, will follow me and embrace the work of Factor-H.
Jimmy Pollard
HD advocate
Having the opportunity to have met Factor-H has been a unique experience. Thanks to them I learned that there are communities such as patients with Huntinton’s Disease, where we can somehow, with our work and love of service, contribute to improve their living conditions.
Thank you Factor-H for this great opportunity!
Carmen Lucia Avendaño Escorcia
Director Volunteer Department, Universidad Metropolitana, Colombia
Factor-H has made possible that hope is not lost for the Venezuelan HD communities. That children and adults with HD and their families can have better opportunities in life. As Factor-H main collaborators in Venezuela, we fully share this objective, and work closely together with drive and passion to bring the attention these communities need, to provide them with better health, nutrition, education and other basic necessities. Barranquitas & San Luis are not forgotten, and their existence in the world will no longer be hidden.
Marina Gonzalez de Kauffman
President, Fundacion Habitat LUZ
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