Vídeos de KrabbeConnect
Esta biblioteca se estableció para informar a los pacientes, sus cuidadores y otras personas sobre la investigaciónes realizadas sobre la enfermedad de Krabbe. La investigación científica mejora las herramientas del diagnóstico y avanza los tratamientos, sin embargo, los artículos publicados a menudo resultan en barreras al acceso y dialectos médicos. La biblioteca, que actualmente se encuentra en las etapas iniciales, aliviará este obstáculo al brindar acceso a artículos publicados, transformados amablemente a un contexto ententible para el paciente por KrabbeConnect, para garantizar que quienes viven con la enfermedad de Krabbe estén conectados a la investigación científica.
Videos
How did this happen? How did my child inherit Krabbe disease?
You’re not alone in asking this question. This is one of the most common questions asked when one learns that their child or loved one has been diagnosed with Krabbe disease. To learn more about how an individual inherits Krabbe disease, follow the link to a short video about autosomal recessive inheritance.
A 3-minute video with Krabbe disease expert, Dr. Joanne Kurtzberg, and 4 amazing transplanted Krabbe disease patients. We’re so thankful for transplant to help patients with this rare neurological disease live a better life. Yet, it’s important we share this video as transplanted patients need additional therapies to ensure they can continue living their best life.
Dragon and Lana, parents of Nikola, sit down with KrabbeConnect, to share their Krabbe disease journey. Krabbe disease is a rare neurological disease that results from the loss of the protective covering (myelin sheath) surrounding nerve cells. Dragon and Lana, residents of Virginia, share their story with the hopes of further educating the medical community and others about the need for nationwide newborn screening to allow Krabbe disease patients to live their best life. KrabbeConnect extends their deepest gratitude to the Grujicic and Studio Center for this educational video.
Please join us live on October 10th, 2020 for our, «A Million Dreams,» gala as KrabbeConnect highlights patient stories, embraces the generosity of our corporate sponsors, pays tribute to those patients diagnosed with Krabbe disease, and fundraises to the max to reach a day in which each patient can live a life free of Krabbe disease. As we gather safely from our homes, we want our community to know we are working harder than ever to unify work to #curekrabbe disease. KrabbeConnect cannot make this happen alone. We need the Krabbe disease experts, clinicians, researchers, family warriors, friends of the foundation, and our very important corporate sponsors to help change the lives of those born with this devastating disease. We guarantee you will leave this event feeling inspired, altruistic, and eager to follow our journey to success–A CURE!!
«Together» is a song written by board member, Dawn Laney, and performed by Marc Gunn. It originally aired on October 10, 2020 during the «A Million Dreams Gala.»