SOBRE NÓS

Sobre nós

A Fundação Cure SURF1 foi fundada em 2018 por um grupo de famílias determinadas a lutar pela vida de nossos filhos.  Cada um de nós tem uma criança diagnosticada com síndrome SURF1 Leigh.  Cada um de nós foi informado por médicos que não há tratamento, nem cura, nem esperança.  E cada um de nós se recusou a aceitar isso como uma resposta final.  

Em 2021, depois de abrir caminho com sucesso para a terapia genética SURF1 na UTSW, decidimos expandir nossos esforços e mudamos o nome de nossa fundação de Cure SURF1 Foundation para Cure MITO Foundation.  Nosso foco principal é avançar na pesquisa para a cura da síndrome de Leigh e, eventualmente, da doença mitocondrial como um todo.  Um resultado bem-sucedido significa não apenas esperança para nossos próprios filhos, mas também tratamentos que salvam vidas para as gerações futuras afetadas por essa doença .  

nossa missão

A Cure Mito Foundation é dedicada ao avanço da educação e pesquisa para a síndrome de Leigh e doenças mitocondriais.  Nossa missão é capacitar as famílias a se unirem com um objetivo comum de encontrar tratamentos e, finalmente, uma cura para essa doença devastadora. Os pacientes estão no centro de tudo o que fazemos.

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Quem nós somos

Cure Mito - Woleben family Founders
Doug & Kasey Woleben
Cure Mito - Boggs Family Founders
Courtney e Jacob  Boggs
Cure Mito - Sophia Zilber, Patient Registry Director
Sophia Ziber
Divya Subramaniam - Cure Mito Board Member
Doug & Kasey Woleben
Lauren Ashwin - Cure Mito Board Member
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 - Cure Mito Board Member
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.jfif
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.

Ferencz Family - Cure Mito Partner
Família Ferencz
Proksch Family - Cure Mito Partner
Jasmin & Stephan Proksch
Kissinger family - Cure Mito Partner
Família Kissinger
Lloyd family - Cure Mito Partner
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. 

Nikolaev Family - Cure Mito Partner
família nikolaev
Emerson Family - Cure Mito Partner
família EMERSON
Banasiak Family - Cure Mito Partner
Fedorenki Family - Cure Mito Partner
Família BANASIAK
família FEDORENKO
Yanukovich Family - Cure Mito Partner
família yanukovich
Krysztofiuk Family - Cure Mito Partner
Morris Family - Cure Mito Partner
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  
Alvarez Barral family - Cure Mito Partner
Melling Family - Cure Mito Partner
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.
família barral
Raghavendran Srikanthan - Cure Mito
Família guerreira
Maximo Family - Cure Mito Partner
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 - Cure Mito Partner
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.
Jones Family - Cure Mito Partner
Família guerreira
Paredes Family - Cure Mito Partner
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."
Mancilla Family - Cure Mito Partner
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.

Ajude nossos filhos hoje

O esforço de nossa Fundação para encontrar uma cura para a síndrome de Leigh e a doença mitocondrial é realizado financiando os esforços de médicos e pesquisadores que compartilham nossa paixão e impulso implacável para combater essa doença devastadora.  100% de suas doações são dedutíveis de impostos e irão diretamente para apoiar pesquisas.  A Cure Mito Foundation é uma organização sem fins lucrativos 501(c)(3).  Nós agradecemos por seu apoio!