SOBRE NOSOTROS
Sobre nosotros
La Fundación Cure SURF1 fue fundada en 2018 por un grupo de familias decididas a luchar por la vida de nuestros hijos. Cada uno de nosotros tiene un niño pequeño diagnosticado con el síndrome de SURF1 Leigh. Los médicos nos han dicho a cada uno de nosotros que no hay tratamiento, ni cura, ni esperanza. Y cada uno de nosotros se ha negado a aceptar esto como una respuesta final.
En 2021, después de abrir con éxito el camino para la terapia génica SURF1 en UTSW, decidimos expandir nuestros esfuerzos y cambiamos el nombre de nuestra fundación de Cure SURF1 Foundation a Cure MITO Foundation. Nuestro objetivo principal es avanzar en la investigación hacia una cura para el síndrome de Leigh y, finalmente, para la enfermedad mitocondrial en su conjunto. Un resultado exitoso significará no solo esperanza para nuestros propios hijos, sino también tratamientos que salvarán la vida de las futuras generaciones afectadas por esta enfermedad .
nuestra misión
La Fundación Cure Mito se dedica a promover la educación y la investigación del síndrome de Leigh y la enfermedad mitocondrial. Nuestra misión es capacitar a las familias para que se unan con el objetivo común de encontrar tratamientos y, en última instancia, una cura para esta devastadora enfermedad. Los pacientes están en el centro de todo lo que hacemos.
Quienes somos
Doug y Kasey Woleben
Courtney y jacob Boggs
Sophia Zilber
Doug y Kasey Woleben
Lauren ashwin
Board Member
"Our love and joy, Delta was diagnosed with SURF1 at 2.5 years old after a year of physical delays and gastrointestinal issues. We are dedicated to raising awareness and supporting the science necessary to finding treatment for all kids impacted by Leigh Syndrome. "Discouragement cannot enter a thankful heart.'"
Kiran Ramachandran
Board Member
"Aadya was a normal child till she turned 1. When she stopped putting on weight we started meeting specialists to know more. It took us over a year and a half to find an answer, a medical diagnosis we had never heard of before - Leigh Syndrome. We want to help promote and raise awareness for this rare disease. "
Bunmi Owolabi
Outreach Ambassador
Bunmi is a graduate research student at the department of biochemistry, University of Ibadan. His
research was focused on malaria and the mitochondria.
He aims to focus on mitochondrial and metabolic syndrome research in the nearest future as a
doctoral student.
Familia Ferencz
jazmín y stephan proksch
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familia kissinger
lloyd family
Partner Family - Australia
When Lola was diagnosed in the January of 2017 with Surf1 deficiency, at 2.5years old, Lloyds' whole world changed. From that day they promised to fight to help find a treatment or cure for Lola and other children with Leigh syndrome. Lola is now 7 and although mito has taken some abilities from her, she never complains and is always smiling or laughing.
familia nikolaev
familia EMERSON
familia BANASIAK
familia FEDORENKO
morris family
Partner family - USA
The Morris family is from Seattle, Washington. Colson lived with mitochondrial disease until he was four years old, and received excellent care at Seattle Children's Hospital. Yat: https://courageousparentsnetwork.org/blog/author/liz-morris
melling family
Partner family - Australia
Archie has ECHS1d, a Leigh-like syndrome, he was diagnosed at 13 months when he had a sudden onset of symptoms, during a viral illness. He is now quadriplegic, non-verbal and PEJ fed. He is a mostly happy little man, who attends school, Physio, OT and speech therapy.
familia barral
familia guerrera
maximo family
Partner family - France
Gabriel is 10 years old and has Leigh Syndrome caused by MT-ND5 gene. Gabriel's family is dedicated to advancing reserach of his gene mutation for him and all other affected children.
conner family
Partner family - USA
In 2016, Kendall started becoming unsteady in her balance and was diagnosed with Leigh Syndrome at 2.5 years old caused by a de novo mutation in her mitochondrial DNA at m. 3688 G>A. Kendall's mother Taylor Conner says, "It's a cruel, progressive disease, but Kendall is a very determined child which motivates us to find a cure.
familia guerrera
paredes family
Partner Family - Ecuador
""Emmanuel is the best thing that has happened to us in our lives. We love everything about him, to the point that we love every little development or challenge that he overcomes in his health; and one could even say that we love even his illness for the simple fact of being part of it."
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Mancilla Family
Partner Family - Mexico
Leonardo's family says that the disease affects everything in the family - psychologically, economically and morally. They always live with FAITH but at the same time with fear because they don't know how many more years their child will live and if tomorrow he will not be there.
Ayuda a nuestros niños hoy
El esfuerzo de nuestra Fundación para encontrar una cura para el síndrome de Leigh y la enfermedad mitocondrial se logra financiando los esfuerzos de médicos e investigadores que comparten nuestra pasión e impulso incansable para combatir esta devastadora enfermedad. El 100 % de sus donaciones son deducibles de impuestos y se destinarán directamente a apoyar la investigación. La Fundación Cure Mito es una organización sin fines de lucro 501(c)(3). Te damos gracias por tu apoyo!