Register for the Leigh Syndrome Symposium, Join Color for Mito, and More!

Dear Friends, Partners, and Followers of the Cure Mito Foundation,

Welcome to our August 2024 Newsletter! Mitochondrial Disease Awareness Week is just around the corner - please check below for information on our upcoming activities, including the Leigh Syndrome Symposium, the Color for Mito contest, and the various fundraisers our families are hosting throughout September. We invite you to join us and get involved!

We are also excited to share that for the 3rd consecutive year, we've been honored with a 2024 Top-Rated Award from @GreatNonprofits! 🏆 A huge thank you to everyone who has supported us and made this possible.

As always, we hope you find this newsletter will leave you more hopeful, uplifted and inspired,

The Cure Mito team

"Whatever is worth doing at all is worth doing well”

— Philip Dormer Stanhope —

Empower and Inspire: 3rd Annual Leigh Syndrome Symposium - Time to Register!

Our conference agenda is complete! Agenda includes research and clinical care updates, clinical trial updates, patient perspectives, mito taskforce updates and more. Over 200 people are registered so far, and we are expecting a great conference! Please find details and register HERE.

*Please note that not every talk will be recorded, so be sure to register to hear all updates live.

Talks include:

The SURF1 KO pig: A translational model to implement new therapeutic treatments for Leigh Syndrome
Dario Brunetti, PhD, University of Milan

Pre-clinical Stem Cell Models for Leigh Syndrome
Shilpa iYer, PhD, University of Arkansas

Treatments for Mitochondrial Disease: Progress, Problems, and Priorities
Simon Johnson, PhD, Northumbria University

Accelerating Drug Development for Mitochondrial Diseases: A New Framework
Amanda Klein, PharmD CDCES, Critical Path Institute

Thank you to our symposium sponsors

Thank you to our media partners

Color for Mito: Mito Awareness 2024!

Participate in 3 easy steps:

1) Download a coloring page.
2) Color! Kids and siblings are invited to participate (parents are welcome to help!)
3) Take a picture of your finished coloring page and email to info@curemito.org along with the name of the participant and a subject line "Color for Mito". More than one page can be submitted. Feel free to share it on social media and tag us using tag #colorformito

Last day to send your submission is September 15th!

The winners will be selected through a raffle draw!
Prize 1: iPad Mini
Prize 2: AirPods
Prize 3: Amazon $50 gift card

Winners to be announced at Empower and Inspire: Leigh syndrome virtual symposium
on September 17th 2024

Thank you to the families organizing fundraisers to benefit Leigh syndrome research!

Ramachandran family - Karaoke night was on August 16th, please find recording HERE

Marshall family - Football game on September 9th, Golf tournament on September 21st

Boggs family - Football game on September 6th, Winery fundraiser on September 8th

And many virtual fundraisers!

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!

We are Proud to Be a 2024 Top-Rated Nonprofit for the Third Year in a Row!

🎉 For the 3rd consecutive year, we've been honored with a 2024 Top-Rated Award from @GreatNonprofits! 🏆 A huge thank you to everyone who has supported us and made this possible. 💙 Read inspiring stories about us and add your own by clicking HERE!

Meet Us at the Critical Path Institute Global Impact Conference

Sophia will be a panelist at the upcoming Critical Path Institute Global Impact Conference, September 9 - 11 in Washington, D.C. She will participate in a panel session on "Applying Learnings to New Frontiers"

Newly diagnosed families

If you or your loved one have been diagnosed with Leigh syndrome within the past 6 months, we want to extend our support to your family by offering a care package. This opportunity is currently available to US families only.

Please request a package HERE.

Join Leigh syndrome global patient registry

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.

Join the Registry

Check out our published registry papers

Leigh Syndrome Global Patient Registry: Uniting Patients and Researchers Worldwide

Interoperability of Leigh Syndrome Patient Registry Data with Regulatory Submission Standards

Leigh Syndrome Families Checklist

Join the Global Leigh Syndrome Patient Registry

Add your doctors to the medical provider directory

Join our Facebook group

Become a partner family

Volunteer

Email info@curemito.org with your skills and time availability

Join annual Leigh syndrome symposium

Share your story

Email info@curemito.org

Share our printable flyers with your medical team, family and friends

Follow us on social media

Facebook, LinkedIn, X/Twitter, Instagram

Shop in our Bonfire store

Make a donation

Open a fund in honor or memory of your loved one

Start your own fundraising event

Suggest your own idea or project

Remember to visit our website to download and print flyers and bring to your own event, fundraiser, share with your medical team, and more! Learn more HERE.

FREE GENETIC TESTING

Cure 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.

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:

https://www.curemito.org/ways-to-give

Donate Now

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