ABOUT US

About us

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

our mission

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.

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Who We are

Doug & Kasey Woleben

Founders

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

Founders

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 Zilber

Board Member

Sophia has over 15 years of experience in pharmaceutical industry and is volunteering her expertise to help the rare disease community, in memory of her daughter, Miriam.

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Dr. Saima Kayani

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.

Dr. Steven Gray

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. 

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Dr. Berge Menassian

Scientific & Medical Advisory Member

Pediatric neurologist Dr. Berge Minassian has special expertise in caring for patients with epilepsy, neurodegenerative diseases, and neurogenetic conditions.

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Dr. Qinglan ling

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.

dr. Volkmar Weissig

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.

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Kevin w. Freiert, MBA

Patient Registry

Advisor

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.

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Dr. Joana Matos

Patient Registry Advisor

Dr Joana Matos has been working in the biomedical field for more than 15 years and is also volunteering her expertise to help the Rare Disease community. 

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Jasmin and Stephan Proksch

Partner Family

After their son, Ben was diagnosed with Leigh syndrom in November of 2019, Proksch family have made it their mission to end Leigh syndrome. It is a  their greatest wish is to put an end to this disease and enable children to have a life.

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!

our partners

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