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.
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.
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Sophia Zilber
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.
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
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
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. "
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."
Bunmi Owolabi
Outreach Ambassador
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 doctoral student.
Ross Zilber
Development Ambassador
Ross has broad and deep actuarial and risk experience in financial reporting, product development, and investments. He's a Fellow of the Society of Actuaries, Member of the American Academy of Actuaries, Chartered Financial Analyst, Fellow of the Global Association of Risk Professionals, and a holder of CLU and ChFC designations. Ross volunteers in memory of his daughter, Miriam.
OUR ADVISORS
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.
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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
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.
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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
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
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
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
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
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
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
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!