About Us

Doug & Kasey have started several non-profits to save their son, Will, and other children facing mitochondrial diseases like SURF1 Leigh syndrome.

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.

Sophia brings over two decades of pharmaceutical expertise to her volunteer work with the rare disease community, a commitment made 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. “

“Lila is a cheerful and loving 11-year-old ECHS1 kiddo who enjoys life with an infectious smile! Even though her diagnosis has been a tough journey, she changes the worldview of nearly everyone she meets. To know Lila is to love her.”

“Zander, our loving, smiling, happy little boy was diagnosed with SURF1 Leigh syndrome at 21 months old. We are dedicated to finding a cure for our son and all others who have SURF1.”

“We received Richie’s ECHS1D diagnosis when he was 2.5 years old. We will keep fighting until a cure is found for Richie and all kids affected by ECHS1D.”

Dr. Saima Kayani is a Child Neurologist with additional training in Medical Genetics. Her advanced training helps her better understand the clinical and basic molecular mechanisms of neurogenetic diseases.

Dr Steven Gray is an Associate Professor in the Department of Pediatrics at the University of Texas Southwestern Medical Center. His major focus is in AAV vector development to develop vectors tailored to serve specific clinical and research applications involving the nervous system.

Dr. Minassian is a pediatric neurologist whose clinical specialties are epilepsy, neurodegenerative diseases, and neurogenetic conditions

Dr. Minassian is the Chief of Child Neurology at UT Southwestern and also leads the Neurosciences Center at Children’s Health in Dallas, TX. 

Dr. Qinglan Ling serves as an Assistant Professor at UMass Chan Medical School.  She completed her postdoctoral studies under the guidance of Dr. Steven Gray at UTSW Medical Center and has been at the forefront of preclinical research aimed at developing an AAV-based gene therapy strategy for SURF1-and MT-ATP6 Leigh syndrome.  Her dedication lies in the field of mitochondrial diseases.

Dr. Weissig is a Tenured Professor of Pharmacology and Chair of the Department of Pharmaceutical Sciences and a Professor of Biomedical Sciences at the Midwestern University College of Graduate Studies and Co-director of the Center of Excellence in Translational Cancer Research. He is the President of the World Mitochondria Society

Danielle Boyce is a patient advocate, data scientist, researcher, public speaker, and writer. Her work has appeared in dozens of scientific journals and her children’s book, Charlie’s Teacher, is used in children’s hospitals throughout the country. Danielle’s work in patient advocacy is inspired by her oldest son, Charlie, now 11, who lives with Lennox-Gastaut Syndrome.

Prof. Alessandro Prigione is a Professor of Pediatric Metabolic Medicine at the University of Düsseldorf, Germany. He has established Prigione group in order develop induced pluripotent stem cells (iPSC)-based approaches for disease modeling and drug discovery of rare incurable neurological and neurodevelopmental disorders affecting mitochondrial metabolism. A specific focus is on Leigh syndrome, which is the most severe mitochondrial disease affecting children.

Dr. Johnson is an Assistant Professor of Neurology at the University of Washington, and a Principal Investigator at Seattle Children’s Research Institute. Dr Johnson’s research is aimed at defining the cell and molecular mechanisms involved in the pathogenesis of mitochondrial disorders. Dr Johnson’s laboratory is currently focused on how the immune system causes disease in Leigh syndrome, and what leads to immune activation in this disease.

Dr. Burnworth is a Professor of Pharmacy Practice at Midwestern University College of
Pharmacy in Glendale, Arizona. She has special interests in rare disease education and
orphan drug development. Burnworth is a volunteer ambassador for the Rare Action
Network (powered by the National Organization for Rare Disorders).

After retiring from Pfizer, Kevin started Salem Oaks, an organization that empowers patients to shape the future of medicine by providing educational programs about Drug Discovery and Development.

​Dr. Afolabi is an Associate Professor at Midwestern University College of Pharmacy in Glendale, Arizona, and a clinical pharmacist at Phoenix Children’s Hospital. Her clinical practice and research focus on the safe and effective use of pharmacotherapeutics in pediatric patients.

Dr. Elsharkawi is an assistant professor of genetics and pediatrics at the Icahn School of Medicine at Mount Sinai, and caring for patients with inborn errors of metabolism and mitochondrial disease.

​Viji Senthilnathan, MS is a leader in clinical operations working on small molecule therapy. Her involvement in rare diseases has been since 2014 starting with her role in running global clinical trials for Leigh Syndrome, MELAS, MERFF, RARS2, Pearson Syndrome, Friedreich Ataxia, Amyotrophic lateral sclerosis (ALS), Parkinson Disease and Rett Syndrome. She works with various patient advocacy groups to understand patient’s perspectives for a clinical trial and ensures that the patient-centric approach is incorporated into the study design.

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.

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.

“Brighton, has Leigh Syndrome. She is two years old and was diagnosed at 9m old. We let her lead the way and her quality of life is so important to us. We are on the Mississippi Gulf Coast and we receive her care in New Orleans. Every day we pray for medical advancements and a cure!”

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!

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 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.”

Lina and Malachi both have SURF1 Leigh Syndrome.  Emerson family is dedicated to finding a cure.

“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.”

“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!.”

“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!”

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!”

“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. 

“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.

“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.”

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.

 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.

“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.”

“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.”

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.

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.

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!! 

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.

Mourya was diagnosed with Leigh syndrome at 2.5 years old.

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.

“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.”

“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.”

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.

“Ana lights up any room she enters and brings joy to anyone who gets to know her. She is smart and witty and she has a stubborn will to be as much as possible a healthy child. She has been diagnosed with Leigh Syndrome Surf 1 when she was 21 months and since that moment we pray every day and we are grateful for every little progress she makes. We are positive that soon we will be able to treat our children and give them the childhood they deserve.”

“Mia is a 7 years old. She is very courageous and a caring sister. She loves all animals and wants to be a veterinarian when she grows up. She was diagnosed with SURF1 Leigh Syndrome at age 4 after a genetic testing. Our biggest wish as a family is to bring awareness to Mitochondrial diseases and help pave the way to treatment and a cure.”

“Jonas has ECHS1d, a Leigh-like syndrome, he was diagnosed at 6 years however first signs showed much earlier. He is fighting his disease very bravely, never gives up and has an extremely positive attitude to anything he is doing despite all the limitations the disease brings with it. He has changed our life priorities-the biggest one is smile on Jonas’s face. We will do anything to help him and will never lose hope for finding a cure.”

“Raquel is 6 years old, she started regressing at 10 months and when she was 1 year 3 months old, after a major mito crash she was diagnosed with ECHS1 Deficiency.  We’ve been on a mission since she was diagnosed so we can raise awareness and funds and hopefully find a cure for ECHS1 soon. She is a beautiful happy girl and we will always fight for her.”