Hi I am from India, when I was diagnosed with Rare Disease I was left with no hope since there is no treatment for this condition in India and enough awareness for Mitochondrial Disease, then I started to Google, Cure Mito a nonprofit organization organization working towards research in mitochondria gave me hope,very much kind people, Happy to be part of it,They have collaborated with various Institutions and conducting various workshops, spreading awareness constantly, Thanks to Founders, Patients, Parents, Doctors, Researchers, Volunteers, Bloggers everyone who are constantly working towards goal.
The Cure Mito Foundation is doing amazing work to support those affected by Leigh syndrome. They provide crucial resources such as a global patient registry, educational websites, and directories of healthcare providers. Their virtual symposiums and free genetic testing opportunities are truly outstanding, and the fact that they are driven by families directly impacted by the disease makes their passion and dedication even more inspiring. Their efforts in funding research and collaborating with other organizations are truly commendable. The Cure Mito Foundation is truly making a significant difference in the fight against Leigh syndrome.
My grand daughter Aadya Kiran was diagnosed with Leigh Syndrome when she was around 2 years old Gradually she lost her skill to walk , Stand , Sit , Talk or eat . Though initially, it was a shock for us as we had never ever heard of this rare disease, we banked our hopes on Cure Mito Foundation . Bound by wheel chair , Supported by machines for feed and breathing , we still keep hoping for a Miracle to work for Aaadya and Cure for Leigh Syndrome
Cure Mito Foundation , a parent led Non Profit Organization with a Mission to accelerate patient centered research , Treatments and Cures is banking on us to create awareness , raise funds and generous donations for this cause .
I on behalf of Aadya and her parents would like to thank Cure Mito for this cause and mission
Gita Ramachandran
gracias gracias gracias! Por todo lo que hacen por nosotros, somos de Argentina papás de Atilio y Benito y estamos luchando con ustedes por el síndrome de leigh, gracias por apoyarnos y darnos la esperanza necesaria para no rendirnos
My daughter was diagnosed with Leigh Syndrome at 10m old. We had never heard of this rare disease before. We didn’t know what to do or where to turn. Thankfully we found the Cure Mito Foundation and were able to get connected with others facing a mitochondrial disease. They have been so helpful and encouraging in a time that can be so devastating.
My daughter who is 7 y.o. now was born with a Mitochondrial disease (Leigh Syndrome) in 2017. We were devastated until we found about The Cure Mito Foundation! These people gave us hope for a true cure and the funds they raise go directly for research towards finding one. Since then, we actively support the Foundation's effort to achieve this goal.
Being partners of Cure Mito gives us so much hope. From finding other families for support to getting help for funding research. It’s amazing to have this foundation.
Cure Mito is a fantastic organization led by a truly outstanding team. It has been my great pleasure to work with them over the past year to advocate for patients with mitochondrial disease.
So incredibly thankful that this non-profit even exists! The hope it gives to our family for our nephew is immeasurable. I love volunteering with Cure Mito and helping make a difference in these kids' lives.
When it comes to patient registries, Cure Mito leads the pack! This trendsetting foundation quite literally wrote the playbook on how to effectively capture the patient / caregiver voice. They share their resources widely and freely with other rare disesase organizations, and are the go-to resource for new advocates looking for guidance. I am so grateful for their leadership and guidance!
Cure Mito Foundation supports families living life with Mitochondrial diseases and they do an amazing job at it. We have been lucky to partner with the Cure Mito Foundation and are fierce advocates for the amazing work they've done.
I have loved my experience working with Cure Mito! They are doing patient-first, cutting-edge work. They are experts in their field and are role models to many in their community.
As first a parent of a child with a mitochondrial condition, Cure Mito was instrumental in helping us navigate everything that comes hand in hand with the diagnosis. The monthly meetups where we discuss fundraising efforts and share our personal stories has helped to bring a community that has always had answers for us. I'm very happy to now be able to contribute as a board member too to this organization.
Cure Mito Foundation of supports and focuses on families tending to the difficult and complicated rare disease, Leigh Syndrome, as well as other Mitochondrial diseases. Know Rare, a patient support initiative helps rare disease patients connect to specialists and clinical studies. We have had the good fortune to collaborate with Cure Mito Foundation and proud to post and reach out through our social media channels with valuable information about Cure Mito Foundation, sharing their amazing work to create and design a registry to help scientists tap patients with Leigh Syndrome with the goal to participate in research and learn more about this devastating disease and the families it impacts. The Cure Mito Foundation team is professional and determined to work towards a cure for Leigh Syndrome. Know Rare is glad to support their efforts where we can.
Cure Mito Foundation is a guiding light for families devastated by mitochondrial disease. No donations go to overhead, all donations go to research and advocacy. Not only are they helping children with Leigh's Syndrome and their families, they are also helping other patient advocacy groups and empowering them with knowledge to make wise choices. Their work is foundational and transformational.
As difficult as the diagnosis of a rare disease is, it was the strength of the rare disease community that pulled us through the first few months. In a very short time, Cure Mito has already made a significant impact by bringing together caregivers and patients and providing them a platform to connect, while also raising awareness of these rare conditions and fundraising to find a cure.
I encountered Sophia a few years ago online by chance and we shared experiences of struggling to build meaningful registries in the rare disease space. I run a rare disease organisation for a vaguely related disease, in that it is mitochondrial in origin, but otherwise it has very different outcomes and (most likely) treatment pathways. I say most likely, because who knows? We are learning something new every day.
And I am learning so much from Sophia and her colleagues, who have moved mountains in the past few years and I know it has not fallen into their laps - it has taken hard work and dedication. What they are doing for the Leigh Disease community is amazing, but what they are doing by blazing a trail for other rare disease groups to follow is even more amazing. Together we really are stronger and Cure Mito demonstrates that in spades!
Cure Mito is a wonderful resource for families dealing with diagnosis of Leigh syndrome and other mitochondrial disorders. We are grateful for their support and partnership as a member of our Patients Alliance program at IndoUSrare to help support families of Indian origin based in the Indian subcontinent and the Indian diaspora globally.
Cure Mito Foundation is dedicated to advancing the drug development needs of those living with mitochondrial disease. They are excellent partners, willing to collaborate efficiently and ethically. We are grateful for leaders like Sophia, ensuring that any effort reflects the needs of the patients.
I have been impressed with CureMito's proactive efforts to collect data about Leigh's Syndrome. As part of the data advisory board for the Leigh's Syndrome Registry, I have seen how the organization has brought together the people with the right skills and the right motivations. The progress made is such a short time has far exceeded my expectations.
Beyond the registry, CureMito is doing a great job of educating their community and raising awareness of the wide range of mitochondrial diseases. This can only be accomplished by the shared efforts of many volunteers.
Working with CureMito has been such a wonderful experience. They are very professional, knowledgeable, and willing to help improve diagnosis and treatment for all individuals with mitochondrial disease. For them it is truly a personal mission to make everyone they touch benefit from the interaction.
Cure Mito is one of the most dedicated groups of people in the Mito community that I have seen. Sophia is an amazing communicator and is always willing to share information. This space is a godsend for those in need of information and support. A+++ in my book.
The Cure Mito Foundation is the strength and support of families in search of a cure. The families and the Foundation meet challenges and setbacks but never give up hope or their efforts for their children's health and lives.
A little known but a very important foundation that is working hard to find a cure for a very rare disease. These adorable children need all the help they can get.
Finding out your two children have Leigh's Syndrome (a Mitochondrial Disorder) can be overwhelming, devastating, and life-changing.
As a parent, we were left with numerous questions and very little info or resources until we connected with the CureMito Foundation.
You are not alone and this network is as strong or stronger than UMDF, PALS, and any other mito-related organization.
More Children die from Mitochondrial related disorders/diseases than all pediatric cancers combined. You are not alone and Cure Mito Foundation is here to help you wherever you are in the disease process and anywhere in the world.
When we were diagnosed a year ago, we were given zero hope or help. Finding Cure Mito was the best thing that happened to us. We found a community of parents running the work and every penny going to research. We knew this was the place for us. There are so many resources for newly diagnosed families, so many projects and ways you can get involved for your child and their specific mutation. I cannot recommend this organization enough and help run their wonderful birthday club now for our Leigh Syndrome kiddos!
As a Scientist I have been working in the field of mitochondrial research for over 20 years. A few years ago, I learned from Sophia Zilber about the Cure Mito Foundation and ever since I have been trying to support their mission the best way I can. Remarkably to me is how this foundation is connecting patients and parents of patients with Physicians and Scientists. Patients learn about the scientific progress in this field and Scientists are becoming familiar with the real needs of patients. Both sides, I believe, truly benefit from such interactions. The recently held virtual symposium was a great success and I hope more such events will be organized by Cure Mito in the future.
Soy Jorgelina Barral de Argentina, en un momento muy difícil de nuestras vidas, cuando recientemente habíamos recibido el diagnóstico de Síndrome de Leigh SURF1 de 2 de nuestros 4 hijos, conocimos a la Fundación Cure Mito, conocí a Kasey y valoro mucho el apoyo que recibí de ellos para poder hoy comenzar un camino de lucha en mi país. Hoy vemos la esperanza para nuestras familias! gracias por lo que nos han allanado en este camino.
Cure Mito is such an amazing resource for parents who are trying to deal with a devastating diagnosis. Very grateful for their advocacy and presence!
As a >20 year drug discovery and development expert I was deeply impressed by the professionalism and rigor of the therapeutic solution(s) that CureMito has been able to realize out of innovative research and high-quality CMC. Further, the care and sensitivity of the people at the helm, chiefly Sophia Zilber and Kasey Woleben, ensures that the true needs of patients and their families motivate all development efforts. Meaningful impact on people's lives is clearly of the utmost priority of this organization and all its affiliates/partners.
Cure Mito Foundation helped me connect with other parents who face the same problems as I do as the mother of 2 children diagnosed with Leigh-like Syndrome. It helps so much to find families, who understand what we are going through. Connecting with other families, researchers, doctors through Cure Mito Foundation gives us so much comfort and hope.
When your child is diagnosed with an extremely rare disease, it’s not uncommon to feel hopeless and isolated. Even physicians are of little help as they rarely have the answers to help parents navigate this new world. That’s when I found Cure Mito, a parent-led volunteer organization, that gave me a connection to other families that are going through a similar journey facing the challenges of a neurodegenerative condition. Although I still haven’t found another child with my son’s exact genetic variation of Leigh Syndrome, I feel a sense of comfort and hope knowing that there are other parents with me in this fight — trying to find a cure for childhood mitochondrial disease.
Cure Mito Foundation is truly a patient-based not-for-profit organization. The sole aim is to raise the awareness for Leigh Syndrome and other mitochondrial diseases in order to facilitate the development of a cure through research.
Patients with Leigh Syndrome or any mito condition are admonished to support and join the patient registry.