The XP Grupo Luz de Esperanza, Inc. (XP Light of Hope Group) is a 501(c)(3) nonprofit charitable organization registered in the state of Connecticut. The XP Grupo Luz de Esperanza was founded in 2012 by Fatima Perez who lives with the disease.
The organization XP Grupo Luz de Esperanza (XP Light of Hope Group) works to improve the quality of life of those diagnosed with Xeroderma Pigmentosum, and their families and the persons who care about them.
- The XP Grupo Luz de Esperanza addresses important problems with the development of a website in Spanish and English.
- We are bringing worldwide awareness about XP, especially in the Spanish- speaking countries where resources or information about this disease are scarce.
- We are the first Spanish language website explaining the nature of XP and providing information and support to those affected by XP and their families.
- We are the first Spanish language resource for doctors providing information about symptoms and treatments for this disease.
- We are the place where Hispanic persons diagnosed with XP can find suggestions on everyday living.
- We are the place where doctors and families get questions answered.
- We provide critical support to help individuals obtain ultraviolet (UV) protection equipment and clothing, as well as other life-changing items.
- To inform the public about XP and the conditions related to the disease.
- To provide awareness, support, and education to persons with XP and their families.
- To promote the increase of medical research to find a cure for Xeroderma Pigmentosum.
- To share current information about XP through medical conferences.
- We hope in the near future to offer night camps for children with XP and their families or other support companions. You can help us realize this dream. These camps will give the opportunity to learn more about XP in the comfort of a secure environment.
Persons with XP and their families and other caregivers will not only share the adversities and frustrations of living with XP, but will share ideas for coping with everyday activities. Our camp will provide uplifting outdoor recreational activities under the safety of the moonlight.
Once upon a time many years ago in an Eastern city at night, a man was walking through the dark streets. The city was very dark on moonless nights. One night, he encountered a man carrying a lit oil lamp in his hands and suddenly recognized him. It was his friend Bruno, a blind man living in the town. He asked: “What are you doing, Bruno? If you are blind, why do you carry a lighted lamp in your hands? The blind man responded: “I do not carry the lamp to see my way. I know the streets by heart. I carry this light so others can find their way when they see me in the darkness. This light is important for me because it serves to guide others along their way.”Have you thought about how important you are in the life of another person? Each one of us can light the way for ourselves as well as for others so they can see their way too. Lighting a path for others is not an easy task.Many times instead of lighting, we darken the way of others even more. How? By discouraging or criticizing others, by our selfishness or indifference, by our hatred or resentment. Today I ask you to consider what a beautiful world we would have if we would all light up the path of others.
Thanks to the TV program Todos Con Emely for permission to share the story of Bruno.