The Cure SURF1 Foundation was founded in 2018 by a group of families determined to fight for our children’s lives. Each of us has a young child diagnosed with SURF1 Leigh syndrome. Each of us has been told by doctors that there is no treatment, no cure, and no hope. And each of us has refused to accept this as a final answer.
In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to expand our efforts and changed the name of our foundation from the Cure SURF1 Foundation to the Cure MITO Foundation. Our primary focus is advancing research towards a cure for Leigh syndrome and eventually for mitochondrial disease as a whole. A successful outcome will mean not only hope for our own children, but also life-saving treatments for future generations impacted by this disease.
The Cure Mito Foundation is dedicated to advancing education and research for Leigh syndrome and mitochondrial disease. Our mission is to empower families to come together with a common goal of finding treatments, and ultimately a cure, for this devastating disease. Patients are at the heart of everything we do.
Who We are
Doug & Kasey Woleben
Doug & Kasey have started several
non-profits to save their son, Will, and other children facing mitochondrial diseases like SURF1 Leigh syndrome.
Courtney & Jacob Boggs
After their daughter, Emma Grace, was diagnosed with SURF1 Leigh Syndrome, they made it their life's mission to raise awareness and funding for LS.
Board Member, Patient Registry Director
Sophia has 20 years of experience in pharmaceutical industry and is volunteering her expertise to help the rare disease community, in memory of her daughter, Miriam.
"Kshiti was only 16 months old, when diagnosed with SURF1 Leigh Syndrome in 2018. Our efforts to focus on and contribute to research, in the desperate search for a cure began soon after, and this remains our single minded focus."
"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.'"
"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 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
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.
Jasmin & Stephan Proksch
Partner Family - Austria
After their son, Ben was diagnosed with Leigh syndrome in November of 2019, Proksch family made it their mission to end Leigh syndrome. It is their greatest wish is to put an end to this disease and enable children to have a life.
Partner Family - USA
Harold was born on February 24, 2017. He started showing delays at 6 months, had a mitochondrial crash at 11 months old and was diagnosed around 1 year. Harold can say hi and mom sometimes.Even though he faces many issues and struggles, he remains a happy boy!
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.
Partner Family - Bulgaria
Nikolaev family says: "Rali is now 4 years old, but she does not have much more time left with us. She keeps fighting Leigh syndrome eversince she was born and thanks to more than 15 bitter, sour and hot suppliments, she made it that far. But this is not a cure and the disease slowly takes her life."
Partner Family - USA
Lina and Malachi both have SURF1 Leigh Syndrome. Emerson family is dedicated to finding a cure.
Partner Family - Poland
"Kacper was diagnosed with surf1 deficiency in May 2018. Our whole life changed that day, but we knew we couldn't give up and we had to fight for medicine or therapy to save our son. Despite the illness that he has been through a lot, I do not give up, he is still a happy and smiling boy, and we strongly believe that our child and all children with Leigh Syndrome will receive their cure on time."
Partner Family - Russia
"Family is what it is worth waking up for every day, breathing every second, enjoying every moment in life, despite any obstacles. I ask the universe to give Artemiy strength to survive the illness and in memory of our daughter Ksenia, I will fight and go forward to find treatment for children with Leigh Syndrome!."
Partner Family - Belarus
"In our family, two children - Ksenia (5 years old) and Kirill (2 years old) are fighting a horrible diagnosis. My children are my heroes and my incentive not to give up, but continue in search of a cure!"
Partner Family - Czech Republic
"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 days when their sons were born are the most beautiful in Krysztofiuk's family's lives, but they have to fight for the health of their younger son. "Family love and support, divine help, determination and self-confidence make it possible to achieve something that you have never even dreamed of. We know that the day will come that our greatest dream will come true!"
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
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.
Álvarez Barral family
Partner Family - Argentina
"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."
"I am from India and I have Mitochondrial disease called Leigh Syndrome,We are together in Cure Mito Foundation,adding new patients medical records with Leigh Syndrome to CoRS and Allstripes registry, creating awareness and developing new effective therapies to treat patients."
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 - USA
"Just before her first birthday, Millie developed issues of failure to thrive and motor regressions. We then started the journey towards a diagnosis and received the devastating news of SURF1 Leigh Syndrome when she was only 18 months. Like all other families, we are looking for a cure to save our sweet daughter and show her all the world can offer."
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.
Help our kids today
Our Foundation’s effort to find a cure for Leigh syndrome and mitochondrial disease is accomplished by funding the efforts of doctors and researchers who share our passion and relentless drive to fight this devastating disease. 100% of your donations are tax deductible and will go directly to support research. The Cure Mito Foundation is a 501(c)(3) nonprofit organization. We thank you for your support!