Waterford, CT - February 14, 2024 - While living in the midst of darkness, Fátima Pérez who is the founder and president of XP Grupo Luz de Esperanza, Inc. (XP Light of Hope Group) created the bilingual international nonprofit charitable organization to be a light of hope for all families affected with Xeroderma Pigmentosum worldwide, with headquarters in Connecticut and New York.
Xeroderma Pigmentosum, is a rare genetic inherited skin disease caused by a defect in the body's ability to repair DNA cells damaged by ultraviolet rays and some artificial lights.
The Enlighten The World With Hope international awareness campaign about XP will tour the Dominican Republic from March 5th to the 25th, 2024. The visit to the Dominican Republic of Ms Pérez and her commission, is to share information about her experience and the difficulties she has gone through to survive with XP disease.
According to Pérez: “People are dying needlessly due to lack of information about XP. The affected families do not know there are effective methods for coping with the severity of this disease. Global awareness is urgent to ensure the survival of those families affected. People with XP must stay protected from sunlight, or their skin and eyes can be severely damaged. This is what has motivated Mrs. Pérez to express that: “it is time to raise awareness throughout the world about this severe skin condition”, which affects many families worldwide. According to her statements, XP has taken away from her everything normal and natural that a human being experiences in life. Early detection of this disease is crucial in order to stop the exposure of babies and young children to the sun's rays which cause unnecessary suffering and disability.At 20 years of age, Pérez became blind due to XP. Although she lost her sense of sight, she says that she has never lost her vision of what she wants to achieve in life. Despite the blindness, all the pain and suffering that she has had to face throughout her existence, she has never allowed Xeroderma Pigmentosum to become an obstacle in her life, or to interfere with the progress of others with her same condition. Her positive spirit has given her the energy to steadfastly fight for others who suffer from this life-altering disease. Therefore, it is urgent for us to disseminate the information of Xeroderma Pigmentosum ,and spread around the world, the medical advances and what our XP Grupo Luz de Esperanza, (XP Light of Hope Group) does to help and support families with XP. “For more than 10 years, adds Fátima, our organization has been able to help many families throughout the world with information, counseling, sun protection items and other essential tools for their survival.”
It is the wish and hope of Fátima Pérez and her organization that all the television, radio, social media, and written press will open their doors upon our arrival to the Dominican Republic. So, that through these successful media, together, we all can be a Light of Hope for all those families affected with Xeroderma Pigmentosum in our Dominican Republic and around the world!
Due to her great enthusiasm and desire to live to help others, Fátima has overcome many challenges and achieved goals that many thought were impossible. Pérez had the courage to board a plane in the Dominican Republic and travel alone to the United States with a medical visa while hoping to obtain professional medical help. Since that time when the young Pérez arrived in a cold US airport without even a proper winter coat, progress has been made with advances in understanding this rare genetic disease.
Every year for the last three years, the XP Grupo Luz de Esperanza has sponsored a Global Virtual Seminar to raise awareness about Xeroderma Pigmentosum. The informative events are organized under the coordination of co-hosts Pérez and the vice president of the XP Light of Hope Group, Dr. Lissette Montolío Payán. Pérez, who is a survivor of this disease, discusses her experiences, difficulties, and suggestions to cope with the disease. Participants from around the world share their life testimonies living with XP. Health professionals give clinical updates during these seminars. Speakers have included the World-renowned experts Dr. W. Clark Lambert and Dr. Khalifa Sharquie, medical scientists specializing in rare diseases and the repair of degenerative effects in DNA. In the latest edition of the seminar, they informed the world of their latest research about the discovery of a lifesaving medication, Floxuridine (5-fluorouracil), which can help dissolve skin cancer tumors in persons who have XP.
Another great exponent at the XP Awareness Seminars was expert nurse Deborah Tamura, a nurse on the Xeroderma Pigmentosum research team at the National Institutes of Health in Bethesda, Maryland, USA. And in this latest edition, we have the presence of Dr. Daisy Margarita Blanco, Dermatologist - Pediatrician, from the Dermatological and Skin Surgery Institute, Dr. Huberto Bogaert Díaz, in the Dominican Republic.
The videos of the past 3 seminars can be found on our bilingual website: (www.xpgrupoluzdeesperanza.org; www.xplightofhopegroup.org).
It is appropriate to inform all families around the world affected with XP about our WhatsApp XP Support Group which is called "Our XP Family”. Currently, families affected with XP from 14 countries are regular visitors of this online group where adversities, sadness, and joy are shared while offering psychological and social support.
As a group therapy dynamic, we invite all families who are dealing with the disease Xeroderma Pigmentosum in our Dominican Republic or anywhere around the world to join our XP Light of Hope Group WhatsApp Support Group. Contact us at: +860-501-7343.
To learn more about what XP Grupo Luz de Esperanza (XP Light of Hope Group) has achieved and what they do globally to help and support families affected with XP, visit on social media including FaceBook and Instagram or the Spanish website (www.xpgrupoluzdeesperanza.org) or the English website (www.xplightofhopegroup.org).
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