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.

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.

Ferencz Family

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.

ECHS1 deficiency - Community for finding a cure - Gene therapy (cure-echs1.com)

Mancilla Family

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.

Kissinger family

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!

ECHS1 deficiency - Community for finding a cure - Gene therapy (cure-echs1.com)

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."

https://give.rarevillage.org/campaign/cure-atp6/c322315

lloyd family
nikolaev family
EMERSON family

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."

BANASIAK family

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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