Leigh syndrome symposium, C-Path mito taskforce updates, Music for Mito and other June news!

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

Welcome to our June 2024 Newsletter! We are actively planning our 3rd Leigh syndrome symposium and look forward to bringing together our community for another inspiring event. We are also sharing with you C-path mito taskforce updates which continues to grow and now has a mission statement! Please find these and other updates in the newsletter below!

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

The Cure Mito team

"Courage is found in unlikely places.”

— J.R.R. Tolkien —

Empower and Inspire: 3rd Annual Leigh Syndrome Symposium is coming up!

Nearly all of our speakers are confirmed, and we are expecting another incredible conference! Live translation to multiple languages will be provided, details will be shared soon. Please save your spot today, our conference platform was at full capacity the previous 2 years. Please learn more HERE.

Some of the testimonials from last year:

"This was incredibly well organized and executed. 10/10 worth my time. I'm so glad resources like this exist for our family!"

"This was fantastic! I had no idea how much was going on for Leigh’s community. Very eye-opening. I had gotten discouraged several years ago and just focused on caring for our daughter. This has re-energized me to do more and try to stay current on research and drug opportunities."

Thank you to our symposium sponsors

Mitochondrial and Inherited Metabolic Diseases Taskforce updates

We are excited to welcome BARTH SYNDROME FOUNDATION to the Mitochondrial and Metabolic disease taskforce led by Critical Path Institute, bringing us to 20 members! Please learn more and view full list of members HERE. Additionally, a mission statement has been accepted by all members.

C-Path webinar: Mitochondrial and Inherited Metabolic Diseases Task Force: The Influential Role of Patient Advocacy Groups in Registry Data Efforts

Sophia Zilber (Cure Mito) and Elizabeth Reynolds (Champ Foundation) will participate in C-Path webinar on July 18, 12-1 pm EST and share about the impact of their registries and their registry publications. Registration details will be available soon and shared through our social media channels.

Newly diagnosed families

First packages have been sent to 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 generously sponsored by an anonymous donor. It 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

Music for Mito - Support Aadya and her family

Aadya one of our Mito Warriors loves to listen to music and go to school. Aadya's parents have launched a #MusicforMito challenge to raise money for research to help Aadya and other kids like her. Please join and support Aadya's family.
To participate:
1) Click on the link (you may have to copy the link and paste into your browser): https://www.facebook.com/donate/team_fundraiser?team_fundraiser_id=829358935770498
2) Click on "Get Started"
3) Join the Challenge by posting a video of you singing or reading a poem
4) Tag 10 friends to take up the challenge

Help us support Aadya's family and build a chain to reach 30,000 musicians who will help raise $100 each for our Mito Warriors.

Ending an Odyssey? The Psychosocial Experiences of Parents after the Genetic Diagnosis of a Mitochondrial Disease in Children

We would like to highlight an important paper published in the Journal of Personalized Medicine. Getting a genetic diagnosis is not always the "end of an odyssey", families need continued support and information on family planning in case of a future pregnancy. Read a paper HERE.

Do you have a confirmed genetic diagnosis? If so, we need your help: your experience can help other patients!

We have teamed up with Probably Genetic to help evolve the next generation of their symptom checker with real insights from the patient's perspective. Please learn more HERE.

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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