Join us as a partner family - let's make a difference together!
For more information or to join please email us at firstname.lastname@example.org
Partner Family - Romania
Nora is 6 years old and the only child diagnosed with ECHS1 Deficiency in Eastern Europe. Ferencz family is hoping that a custom gene therapy will be developed in time to save Nora’s life, after the painful loss of her sister, Anna, age 1.
Жасмин и Стефан Прокш
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.
"Our family has four members. Mom Veronika, dad Miroslav and twins Eliška and Amálie. Amálie has a mitochondrial encephalopathy-SURF1 protein deficiency. Amálka is a huge warrior and every day she proves it with her beautiful smile. We try to help her on her journey as much as we can. We will never lose hope that we will find a cure and a way to save her life."
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
"We fight to cure them, to help others, we fight so that science does not abandon us, that medicine accompanies us saving the lives of our own, we fight to continue living and enjoying. We also fight for others, because we have suffered along the way and we know what these diagnoses hurt our souls."
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.
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.
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.
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."
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.
Partner Family - UK
Harriet was diagnosed with Leigh Syndrome MT-ND6 in March 2021 not long after her 2nd Birthday. She’s always laughing and cuddling her big sister who is currently helping her learn the alphabet. Although Harriet now uses a wheelchair she is trying to get the strength back in her legs and not giving up.
Partner Family - USA
On May 19, 2022.. a day we will never forget, Cooper at 15.5mo was diagnosed with Leigh Syndrome (MT-ATP6 8993T>G). With the devastating news that our sweet baby boy may be taken from us far too soon, we set out to learn and teach everyone every single thing about Leigh Syndrome and Mitochondrial Diseases!!
Partner Family - Colombia
Mateo started having seizures when he was 7 months old. He is currently 13 months old and was recently diagnosed with MT-ATP6 Leigh Syndrome.
We just started this fight, but as a family we will get ahead, he is our motivation.
Partner Family - India
Mourya was diagnosed with Leigh syndrome at 2.5 years old.
Partner Family - Brazil
This is Yume, she has 30 years old. She has Leigh disease and she was diagnosed when she was 5 years old. Today, in addition to needing assistance 24 hours a day, dystonia is being the worst symptom.
Partner Family - Canada
"June 2023, right before his 3rd birthday Kiyaan is diagnosed with SURF1 Leigh Syndrome. What was even more difficult was to know that there is no cure. We, like all other parents, are no different in feeling all the emotions. We want to be part of this journey to help support these
kids in however small a way we can. "
Miner Gilsdorf Family
Partner Family - USA
“Our beloved Lucas was diagnosed with SURF1 Leigh Syndrome and Eosinophilic Esophagitis when he was a year old, after experiencing symptoms since he was 3 weeks old. His name means “bringer of light,” and during his two and ½ years, he lived up to this name in every way. We miss him constantly. We work with Cure Mito because we don’t want other children and families to experience the suffering and loss that is inevitable with a Leigh Syndrome diagnosis today.”
Partner Family - USA
After a long diagnostic odyssey, our beloved Milo was diagnosed with Spastic Ataxia Type 5, an AFG3L2-related Leigh-like syndrome in 2022 when he was 2.5 years old. We refuse to sit back and watch our child decline without trying to change the bleak narrative of mitochondrial diseases. Now we are on a mission to raise awareness and fund targeted research and drug development through our family foundation. Being part of the Cure Mito community gives us much needed support and hope to continue on this journey.
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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!