Dear Friends, Partners, and Followers of the Cure Mito Foundation,
Welcome to our September 2024 Newsletter! Mito Awareness Month has been a success! We brought together nearly 300 patients, researchers, and industry leaders at the 3rd Leigh Syndrome Symposium, received over 120 incredible submissions for the Color for Mito contest, hosted both in-person and virtual fundraisers, and spoke at several events and conferences. We concluded the month by launching a brand-new website!
Thank you to all who joined and supported us! These efforts have not only raised awareness this month but will continue to make an impact for weeks and months to come.
We usually conclude these introductions with a quote, but this month we are sharing two beautiful quotes from our symposium speakers: "Life, even with a genetic disease, is worth living."
- Sammy Basso, Progeria Research Foundation "We are a movement. We are the cherry blossoms on a tree that blooms together and creates something so beautiful, strong, and enduring."- Effie Parks, Once Upon a Gene podcast host
Sincerely,
The Cure Mito team
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We have a brand-new website!!! |
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Based on feedback from our community, we have merged our two websites, curemito.org and aboutleighsyndrome.com, into ONE comprehensive website. This update eliminates duplicate content and makes it easier to find the information you need. Explore the new website
HERE. |
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Empower and Inspire: 3rd Annual Leigh Syndrome Symposium was a success! |
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475 people were registered, of which 268 attended live. 76 used translation platform to listen to the conference in 15 different languages. Thank you to all the speakers and attendees! Recordings will be available soon! Your feedback is very important to us, please share it HERE.
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Thank you to our symposium sponsors |
Thank you to our media partners who helped us share information about the symposium! |
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A huge shoutout to everyone who participated in our Color for Mito contest! With over 120 incredible entries, we were amazed by your creativity! Congratulations to our three winners: Nevada, Niharika, and Lorianne, who won an Apple iPad mini, Apple AirPods, and a $50 Amazon Gift Card.
Thanks a so much for joining the fun to help spread awareness for Leigh syndrome! We will continue sharing all the submissions in the coming weeks!
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Introducing Leigh Syndrome Awareness Day!
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We are excited to announce the establishment of Leigh Syndrome Awareness Day, which will be recognized annually on September 17th! It is a day to honor those affected by Leigh Syndrome, recognize the supporters and advocates, raise awareness of the disease, and remember those lost too soon. Learn more HERE. |
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Thank you to all the families fundraising this September!
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Many families helped us raise funds this September through both in-person and virtual fundraisers! In-person fundraisers included Karaoke night and Musical fundraiser (Ramachandran family), Football game and Golf tournament (Marshall family), Lemonade stand (Ashwin family), Football game, winery fundraiser, and Rudolph Helping Hands 5K
(Boggs family). Walk for Mito is also planned for September 29th (Ramachandran family). THANK YOU for your support!
We are a fully volunteer-run organization, and every dollar raised goes directly toward research for Leigh Syndrome. If you need assistance setting up your own fundraiser or fundraising page, please don’t hesitate to reach out to us at info@curemito.org! |
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Here’s Where We’ve Presented!
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Sophia attended the Critical Path Institute (C-Path) Global Impact Conference and participated in the panel discussion "Applying Learnings to New Frontiers."
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She was joined by esteemed experts, including Krista Casazza (C-Path), Cristina Costantino (Chiesi Global Rare Diseases), Jill Morris ( NINDS, NIH), and Yuliya Yasinskaya (FDA). The panel was moderated by Klaus Romero, CEO of the C-Path. Sophia shared insights on the Cure Mito Leigh Syndrome Registry and the work of the Mitochondrial and Inherited Metabolic Disease Taskforce, highlighting the potential for advancing collaboration and research.
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Kasey participated in the 5th Annual Next Generation Therapeutics Virtual Panel in Children's Hospital of Philadelphia and Leigh syndrome virtual conference organized by the Foundation Sonrie SURF1 in Argentina!
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Join Leigh syndrome global patient registry |
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Leigh syndrome families, become part of the world's largest Leigh syndrome patient registry.
We provide real, tangible results, ensure data is available to researchers and consistently share results with our community, keeping you informed.
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Registry poster to be presented at the OHDSI conference |
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Our poster, Standardizing Registry Data to the OMOP Common Data Model, created in collaboration with Sumptuous Data Sciences, will be presented at the 2024 OHDSI Global Symposium Collaborator Showcase in October. We will share it with our community afterward!
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Despite the many good things happening this month, we are very sad to share that one of LS warriors, Evangeline Emerson has passed away. Our hearts are with the Emerson family. Lina’s legacy will never be forgotten, and we will honor her memory as we continue our work. Donations in Lina's memory can be made HERE. |
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The POLG foundation has produced a powerful and deeply moving film for Mito Awareness Week. We encourage you to take a few minutes to watch it HERE.
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Dr. Douglas Wallace was the first scientist to link mitochondrial DNA mutations to human diseases. Please listen to an interview with him done by Mitochondria World by clicking HERE!
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Check out these recently published papers! |
Cannabidiol ameliorates mitochondrial disease via PPARγ activation in preclinical models Puighermanal, E., Luna-Sánchez, M., Gella, A. et al. Mitochondria transfer-based therapies reduce the morbidity and mortality of Leigh syndrome Nakai, R., Varnum, S., Field, R.L. et al.
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Leigh Syndrome Families Checklist
Volunteer
Share your story Email info@curemito.org
Follow us on social media
Start your own fundraising event
Suggest your own idea or project |
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FREE GENETIC TESTINGCure Mito has partnered with Probably Genetic to increase access to genetic testing within our community. Probably Genetics’ no-cost genetic testing program for mitochondrial disorders is patient-initiated and includes genetic counseling to explain any questions or findings. Please learn more HERE.
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Cure Mito Foundation is a 501(c)(3) nonprofit organization led by parents who volunteer their time to search for a cure. 100% of your donations are tax-deductible and will go directly to research dedicated to mitochondrial diseases.
For many ways to give, please click here: |
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