О НАС

О нас

Фонд Cure SURF1 был основан в 2018 году группой семей, полных решимости бороться за жизнь наших детей.  У каждого из нас есть маленький ребенок с диагнозом синдром Лея SURF1.  Каждому из нас врачи говорили, что нет ни лечения, ни лекарства, ни надежды.  И каждый из нас отказался принять это как окончательный ответ.  

В 2021 году, после успешного открытия пути для генной терапии SURF1 в UTSW, мы решили расширить наши усилия и изменили название нашего фонда с Cure SURF1 Foundation на Cure MITO Foundation.  Нашей основной задачей является продвижение исследований по излечению синдрома Ли и, в конечном итоге, митохондриального заболевания в целом.  Успешный результат будет означать не только надежду для наших собственных детей, но и спасение жизней будущих поколений, пострадавших от этого заболевания .  

Наша миссия

Фонд Cure Mito занимается развитием образования и исследований синдрома Ли и митохондриальных заболеваний.  Наша миссия состоит в том, чтобы дать семьям возможность объединиться для достижения общей цели поиска лечения и, в конечном итоге, лекарства от этой разрушительной болезни. Пациенты находятся в центре всего, что мы делаем.

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Кто мы

Cure Mito - Woleben family Founders
Дуг и Кейси Волебен
Cure Mito - Boggs Family Founders
Кортни и Джейкоб  Боггс
Cure Mito - Sophia Zilber, Patient Registry Director
София Зильбер
Divya Subramaniam - Cure Mito Board Member
Дуг и Кейси Волебен
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
Семья Ференц
Proksch Family - Cure Mito Partner
Жасмин и Стефан Прокш
Kissinger family - Cure Mito Partner
Семья Киссинджеров
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
николаевская семья
Emerson Family - Cure Mito Partner
семья ЭМЕРСОН
Banasiak Family - Cure Mito Partner
Fedorenki Family - Cure Mito Partner
семья БАНАСИАК
семья ФЕДОРЕНКО
Yanukovich Family - Cure Mito Partner
семья януковичей
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.
Баррал семья
Raghavendran Srikanthan - Cure Mito
Семья Уорриер
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
Семья Уорриер
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.

Помогите нашим детям сегодня

Усилия нашего Фонда по поиску лекарства от синдрома Ли и митохондриальной болезни осуществляются за счет финансирования усилий врачей и исследователей, которые разделяют нашу страсть и неустанное стремление бороться с этой разрушительной болезнью.  100% ваших пожертвований не облагаются налогом и пойдут непосредственно на поддержку исследований.  Фонд Cure Mito является некоммерческой организацией 501(c)(3).  Благодарим Вас за поддержку!