Help those being killed by sunlight
Donation protected
Can you imagine living within four walls most of the time because the ultraviolet rays from the sun can kill you?
Well, for the past 15 years this has been my way of life.
I am Fatima Perez, the president and founder of the nonprofit organization XP Grupo Luz de Esperanza (XP Light of Hope Group). I am a survivor of Xeroderma Pigmentosum (XP) a rare genetic disease caused by a defect in the body's ability to repair DNA cells damaged by ultraviolet rays from the sun and some artificial lights. I was exposed to the deadly ultraviolet rays for more than 30 years with no skin or eye protection. I became blind at age 20 due to XP. Through the years, my skin has suffered such damage from the sun, that I often must have surgery to remove multiple skin cancers from my body. Despite all the pain and suffering I encountered throughout my life, my daily battle with XP has inspired me to help families cope with this disease.
Many people worldwide are dying needlessly due to the lack of information about XP. They do not know there are effective methods for coping with the severity of this disease. When I was a little girl in the Dominican Republic, information about XP was not available and it is disheartening to realize that there is still no XP support group in Spanish-speaking countries. XP information can only reach the English-speaking population. Therefore, our organization’s website and all materials are bilingual Spanish and English.
With the support of volunteers and charitable donations, XP Grupo Luz de Esperanza provides educational awareness. Your financial gift buys lifesaving aid for people who have XP and their families enabling them to thrive and survive. Your contribution will be used to help obtain medical supplies and other basic daily life items. Your assistance helps purchase ultraviolet protection equipment and clothing to prevent serious skin and eye damage. Our goal is to purchase thick ultraviolet blocking protective clothing, sunglasses, high SPF sunscreen, ultraviolet light meters, and other vital items for persons living with this disease. Many of these families also suffer from extreme poverty. Coping with this chronic illness and the resulting disability is very difficult and expensive.
Your support can help improve the quality of life of those affected by XP and their families.
Our organization is a 501(c)(3) nonprofit recognized by the United States Internal Revenue Service as a charitable organization. XP Grupo Luz de Esperanza depends on the gifts of individuals, corporate sponsors, and fundraising events. No one receives a salary at this 100% volunteer organization. We appreciate your support. Thank you so much.
If you would like to know more about our organization and about Xeroderma Pigmentosum visit our bilingual website: xplightofhopegroup.org
Well, for the past 15 years this has been my way of life.
I am Fatima Perez, the president and founder of the nonprofit organization XP Grupo Luz de Esperanza (XP Light of Hope Group). I am a survivor of Xeroderma Pigmentosum (XP) a rare genetic disease caused by a defect in the body's ability to repair DNA cells damaged by ultraviolet rays from the sun and some artificial lights. I was exposed to the deadly ultraviolet rays for more than 30 years with no skin or eye protection. I became blind at age 20 due to XP. Through the years, my skin has suffered such damage from the sun, that I often must have surgery to remove multiple skin cancers from my body. Despite all the pain and suffering I encountered throughout my life, my daily battle with XP has inspired me to help families cope with this disease.
Many people worldwide are dying needlessly due to the lack of information about XP. They do not know there are effective methods for coping with the severity of this disease. When I was a little girl in the Dominican Republic, information about XP was not available and it is disheartening to realize that there is still no XP support group in Spanish-speaking countries. XP information can only reach the English-speaking population. Therefore, our organization’s website and all materials are bilingual Spanish and English.
With the support of volunteers and charitable donations, XP Grupo Luz de Esperanza provides educational awareness. Your financial gift buys lifesaving aid for people who have XP and their families enabling them to thrive and survive. Your contribution will be used to help obtain medical supplies and other basic daily life items. Your assistance helps purchase ultraviolet protection equipment and clothing to prevent serious skin and eye damage. Our goal is to purchase thick ultraviolet blocking protective clothing, sunglasses, high SPF sunscreen, ultraviolet light meters, and other vital items for persons living with this disease. Many of these families also suffer from extreme poverty. Coping with this chronic illness and the resulting disability is very difficult and expensive.
Your support can help improve the quality of life of those affected by XP and their families.
Our organization is a 501(c)(3) nonprofit recognized by the United States Internal Revenue Service as a charitable organization. XP Grupo Luz de Esperanza depends on the gifts of individuals, corporate sponsors, and fundraising events. No one receives a salary at this 100% volunteer organization. We appreciate your support. Thank you so much.
If you would like to know more about our organization and about Xeroderma Pigmentosum visit our bilingual website: xplightofhopegroup.org
Organizer
Fátima Pérez
Organizer
Mobile, AL
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