Leigh syndrome symposium agenda, Color for Mito, and other July news!

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

Welcome to our July 2024 Newsletter! In this newsletter, you'll find exciting updates about our upcoming conference, including announcement of our keynote speaker and and the nearly finalized agenda !

Color for Mito contest which we started last year is back for Mito awareness week 2024! Please see below for details, prizes, and how to participate.

You will also find updates on the continued growth of the mito taksforce with C-Path, zoom call for our families in August, impactful new preprint by

Dr. Alessandro Prigione's team, and other updates and opportunities for our community.

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

The Cure Mito team

"When the why gets stronger, the how gets easier”

— Jim Rohn —

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

We are excited to announce our keynote speaker, Sammy Basso! Sammy was diagnosed with Progeria when he was two years-old. Now he is 28, and chose to be a scientist to study his own disease. As a researcher and patient advocate, he will talk about the 25 years of science that is working for a genetic cure and the pivotal role that families and patients had and are having on it. Agenda for the conference is in progress, 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.

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

Thank you to our media partners

Color for Mito: Mito awareness 2024!

In honor of Mitochondrial Disease Awareness in 2024 (September Monday 16 – Sunday 22), we are excited to invite you to participate a Color for Mito event! As we strive to raise awareness about Leigh syndrome and Mitochondrial Disease, we believe that art has the power to inspire, educate, and unite people across the globe.

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

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

First 10 participants to enter will get a kid's book "Zara shares her stripes: a story about accepting your rare condition" (1 book per family).

Thank you to Alexion Pharmaceuticals for donating the books for our kids!

Cure Mito Summer Series

Families - join us on August 11th for a zoom call for our community. Zoom info will be shared later, please follow us for updates.

Deep learning-driven neuromorphogenesis screenings identify repurposable drugs for mitochondrial disease

We are thrilled to share this exciting preprint from Dr. Alessandro Prigione and his team. They have utilized iPSC-derived brain organoids and deep learning screens to identify potential new treatments for #LeighSyndrome. We are honored to have supported this research and to have Kasey Woleben as a co-author on the paper. Find the preprint HERE.

Mitochondrial and Inherited Metabolic Diseases Taskforce updates

We are excited to welcome LILY FOUNDATION to the Mitochondrial and Metabolic disease taskforce led by Critical Path Institute, bringing us to 21 members! Please learn more HERE.

We were honored to participate in the 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) participated in C-Path webinar and shared about the impact of their registries and their registry publications. Recording can be found HERE.

Our registry data was shared to C-Path in 2023. We are excited to now see a master data contribution between our registry partner, Sanford Heatlh and C-Path that will allow more rare disease data to be shared. Please find press release HERE.

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

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

Cure Mito Foundation had a booth at the UMDF conference and shared research, educational resources and patient registry insights from our Leigh Syndrome Global Registry. We also had a very special guest, Lila Suzor who made the cutest bracelets to give away to the attendees.

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

You can unsubscribe at any time.

6808 Old Glory Ct
TX
75071
United States of America