Mito Awareness Week, Empower & Inspire Symposium, ACT4LS, Registry Updates, and More ⭐

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

As we head into a busy and exciting fall, we have so much to share with our Cure Mito community!

Mitochondrial Disease Awareness Week is coming up September 14–20, with several ways to learn, participate, and help raise awareness—including our 5th Annual Empower & Inspire Leigh Syndrome Symposium, Color for Mito, and Leigh Syndrome Awareness Day.

We are also excitedly preparing for ACT4LS: Accelerating Cures and Treatments for Leigh Syndrome, a first-of-its-kind workshop bringing together experts and key stakeholders this October to help move the field forward.

In this newsletter, you'll also find the latest from our Leigh Syndrome Global Patient Registry, community fundraising highlights, research and advocacy updates, and resources for families.

Thank you for continuing to be part of our community and our mission to improve the lives of those affected by Leigh syndrome.

With gratitude,

The Cure Mito Foundation Team

“Always try to be a little kinder than is necessary.”

— J. M. Barrie —

MITO AWARENESS WEEK

SEPTEMBER 14-20

We have a lot of exciting activities planned for Mitochondrial Disease Awareness Week! Check them out below, and follow us on social media to stay updated and join in.

Empower and Inspire: 5th Annual Leigh Syndrome Symposium

Registration is now OPEN for our 5th Annual Empower & Inspire Virtual Leigh Syndrome Symposium!

Don’t miss this opportunity to learn, connect, and hear the latest from the Leigh syndrome community.

Find the agenda and register HERE.

Thank you to our generous sponsors!

Color for Mito is back!

Choose from 3 coloring pages and join the fun! Kids, siblings, friends—everyone is invited to participate. New this year: you can also color online!

Win Amazon gift cards: $100 • $50 • $25.

Kids, siblings, friends - everyone is invited to participate!

Download or color online, learn how to enter, and find all the details HERE.

Leigh Syndrome Awareness Day is September 17th!

Created by Cure Mito Foundation in 2024, this day is dedicated to raising awareness of Leigh syndrome and bringing our global community together.

Learn more about Leigh Syndrome Awareness Day HERE.

ACT4LS: Accelerating Cures and Treatments for Leigh Syndrome

On October 8–9, we are bringing together more than 30 key stakeholders spanning basic science, clinical medicine, therapeutics, and regulatory agencies. Participants include seasoned experts in Leigh syndrome as well as experts from adjacent fields who can bring new perspectives and approaches.

Together, we will review the current state of the science, identify key barriers to research and therapeutic development, and define a roadmap for moving the field forward.

The event will take place at the Broad Institute in Boston. We are incredibly excited about this first-of-its-kind gathering and look forward to sharing the discussions, outcomes, and next steps with our community.

Mito Markers Meet-Up is Happening in September!

This September, our families will come together in Dallas to participate in the Mito Markers Project for SURF1 Leigh syndrome, led by Dr. Rohit Sharma and Dr. Melissa Walker at Massachusetts General Hospital.

We look forward to sharing what we learn from this important research with our community.

Leigh Syndrome Global Patient Registry

Registry dashboard is updated with the latest data! Explore high level data overview HERE.

Dashboard is updated QUARTERLY to ensure our community is fully informed about the latest Leigh Syndrome Global Patient Registry data and insights.

We encourage all families who have a loved one living with Leigh syndrome or who has passed away from Leigh syndrome to join the registry. Your participation matters!

Registry links that may help:

Find all information about the registry HERE.

Use AI assistant to help you enroll and complete the registry questions.

Browse registry published papers HERE.

View high level data overview HERE.

Article about the registry in CNBC Cures Newsletter.

Researchers can connect their own research data to participant's data in the registry via a CRID.

Thank You for Fundraising

Thank you to the many individuals and families who continue to fundraise in support of Cure Mito. Your dedication, creativity, and commitment are helping to drive research forward and bring hope to our community.

This month alone, our community has raised almost $100,000 through the One Shot to Live campaign to support SURF1 gene therapy research. We are incredibly grateful to everyone who has donated, fundraised, shared the campaign, and helped make this possible.

This month we are also honored to highlight

💚 Ryker's friends a family for holding a lemonade stand fundraiser, while Ryker was in the hospital.

💚 Anthony Marra for planning several fundraisers in September and October honoring the memory if his granddaughter, Salem.

💚 Mackenzie Buzzard for creating a fun “Kinda Chic” post for Cure Mito, inspired by the latest TikTok trend! Check out, like, and share the post HERE.

⭐ If you’ve recently donated, don’t forget to check whether your employer will match your gift! It only takes a minute to check and could double the impact of your donation. Check if your employer matches donations

Advancing Better Endpoints for Pediatric Rare Disease

We’re proud to be one of the founding partners of the new Composite and Multimodal Endpoints for Pediatric Rare Disease initiative, led by the Digital Medicine Society (DiMe).

For Leigh syndrome, this work is especially important. We still lack established endpoints that adequately capture meaningful changes in how children feel and function in their daily lives.

We look forward to contributing the Leigh syndrome community’s perspective to this important work and will continue to share the initiative’s progress with our community. Learn more HERE.

Cure Mito Resources

Did you know that Cure Mito offers a variety of resources for individuals, families, and healthcare professionals? Explore some of them below.

Meet Leigh Syndrome Heroes - family stories

Support for families and newly diagnosed care packages

Information about family planning for Leigh syndrome and mitochondrial disease

Resources for Medical Providers

Plain language glossary of research and clinical terms

Papers that might of interest to our community

Amazon store front

Things that might be of interest

We enjoy staying up to date on developments that may be of interest to our community and sharing them with you.

Journal of Participatory Medicine - Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey

Parental hope in paediatric palliative care: a systematic review of the ethical issues in evidence-based literature | BMC Medical Ethics | Springer Nature Link

Cure Mito Foundation is a 501(c)(3) nonprofit organization founded by parents and driven by a deep commitment to finding a cure for Leigh syndrome and other mitochondrial diseases. Your tax-deductible donation directly supports research focused on advancing treatments and improving the lives of those affected.

For many ways to give, please click here:

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

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