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The Cure Mito Foundation was established in 2018 as a Cure SURF1 Foundation by a group of families determined to fight for their 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

our mission

Our mission is to unite the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures.


Who We are

Cure Mito - Woleben family Founders

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.

Cure Mito - Boggs Family Founders

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.

Cure Mito - Sophia

Sophia Zilber
Board Member, Patient Registry Director

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.

Divya Subramaniam - Cure Mito Board Member

Divya Subramaniam
Board Member

"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."

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. "

Bill Suzor
Board Member

"Lila is a cheerful and loving 10-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."

marshall family.jpg

Patrick Marshall
Board Member

"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."

family photo.jpg

Anna Kerner Andersson
Board Member

"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."


Saima Kayani - Cure Mito Medical Advisory Member
Saima Kayani, MD

Scientific & Medical Advisory Member

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.

Steven Gray - Cure Mito Medical Advisor
Steven Gray, PHD

Scientific & Medical Advisory Member

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. 

Berge Minassian, MD - Cure Mito
Berge Minassian, MD

Scientific & Medical Advisory Member

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. 

Qinglan Ling, PHD - Cure Mito
Qinglan Ling, PHD

Scientific & Medical Advisory Member

Dr. Qinglan Ling is a postdoctoral researcher in the laboratory of Dr. Steven Gray at the University of Texas Southwestern Medical Center and has been leading preclinical studies to establish an AAV-based gene therapy strategy for SURF1-related Leigh syndrome.

Volkmar Weissig, SCD, PHD - Cure Mito
Volkmar Weissig, SCD, PHD

Scientific & Medical Advisory Member

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,MPH,DPA - Cure Mito
Danielle Boyce,MPH,DPA

Scientific & Medical Advisory Member

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. 

Alessandro Prigione, MD, PHD - Cure Mito
Alessandro Prigione, MD, PHD

Scientific & Medical Advisory Member

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.

Simon Johnson, PHD - Cure Mito
Simon Johnson, PHD

Scientific & Medical Advisory Member

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.

Melinda J. Burnworth, PHARMD, FASHP, FAZPA, BCPS -Cure Mito
Melinda J. Burnworth, PHARMD, FASHP, FAZPA, BCPS

Scientific & Medical Advisory Member

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).

Kevin W. Freiert,MBA - Cure Mito
Kevin W. Freiert,MBA

Scientific & Medical Advisory Member

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.

Titilola Afolabi, PharmD, BCPPS - Cure Mito
Titilola Afolabi, PharmD, BCPPS

Scientific & Medical Advisory Member

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.

Ibrahim Elsharkawi, MD

Scientific & Medical Advisory Member

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

Scientific & Medical Advisory Member

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. 

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!


Cure Mito Foundation does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.

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