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Family - Cure Mito

ÜBER UNS

Join us as a partner family - let's make a difference together!

For more information or to join please email us at info@curemito.org

Ferencz Family - Cure Mito Partner
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)

Proksch Family - Cure Mito Partner
Jasmin & Stephan Proksch
Kissinger family - Cure Mito Partner
Familie Kissinger
Lloyd family - Cure Mito Partner

LLOYD FAMILY
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. 

Nikolaev Family - Cure Mito Partner
Nikolaev Familie
Emerson Family - Cure Mito Partner
Familie Emerson
Banasiak Family - Cure Mito Partner
Fedorenki Family - Cure Mito Partner
Familie FEDORENKO
BANASIAK-Familie
Yanukovich Family - Cure Mito Partner
Familie Janukowitsch
Havlikova Family - Cure Mito Partner

HAVLÍKOVÁ FAMILY

Partner Family -  Czech Republic

 

"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."

Morris Family - Cure Mito Partner

MORRIS FAMILY

Partner Family -  USA

 

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. Yat: https://courageousparentsnetwork.org/blog/author/liz-morris  

Alvarez Barral family - Cure Mito Partner

ÁLVAREZ BARRAL FAMILY

Partner Family -  Argentina

 

"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."

Melling Family - Cure Mito Partner

MELLING FAMILY

Partner Family -  Australia

 

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.

Raghavendran Srikanthan - Cure Mito
Familie Krieger
Maximo Family - Cure Mito Partner

MAXIMO FAMILY
Partner Family - France

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.

Conner Family - Cure Mito Partner

CONNER FAMILY
Partner Family -  USA

 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.

Jones Family - Cure Mito Partner
Familie Krieger
Paredes Family - Cure Mito Partner

PAREDES FAMILY
Partner Family - Ecuador

""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."

Mancilla Family - Cure Mito Partner

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.

Fox familiy - Leigh syndrome families, Cure mito

FOX FAMILY
Partner Family - UK

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.

King family - Leigh syndrome families, Cure Mito partner families

KING FAMILY
Partner Family - USA


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!! 

 https://www.Facebook.com/allaboutcooperking

Jimenez family -  - Leigh syndrome families, Cure Mito partner families

JIMENEZ FAMILY
Partner Family - Colombia

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.

Shah family -  - Leigh syndrome families, Cure Mito partner families

SHAH FAMILY


Partner Family - India
Mourya was diagnosed with Leigh syndrome at 2.5 years old.

Sugahara family -  - Leigh syndrome families, Cure Mito partner families

SUGAHARA  FAMILY
Partner Family - Brazil

 

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.

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PATANKAR FAMILY
Partner Family - Canada

"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. "

 

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Miner Gilsdorf Family

Partner Family - USA

“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.”

https://courageousparentsnetwork.org/blog/author/kimberly-gilsdorf/

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McCormack Family

Partner Family - USA

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.

https://www.mightymilo.org/

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Suzor Family

Partner Family - USA

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.

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Urbina Family

Partner Family - USA

“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.”

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Matys Family

Partner Family - Czech Republic

“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.”

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Zonana Family

Partner Family - Mexico

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.”

Lola - Leigh syndrome kids, Cure Mito kids

Helfen Sie unseren Kindern heute

Die Bemühungen unserer Stiftung, ein Heilmittel für das Leigh-Syndrom und die mitochondriale Erkrankung zu finden, werden durch die Finanzierung der Bemühungen von Ärzten und Forschern erreicht, die unsere Leidenschaft und unseren unermüdlichen Antrieb zur Bekämpfung dieser verheerenden Krankheit teilen.  Ihre Spenden sind zu 100 % steuerlich absetzbar und fließen direkt in die Forschungsförderung.  Die Cure Mito Foundation ist eine gemeinnützige Organisation gemäß 501(c)(3).  Wir danken Ihnen für Ihre Unterstützung!

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