Clinical Research ID (CRID), 4th Annual Leigh Syndrome Symposium, and more news!

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

Welcome to our April 2025 newsletter. This month, we’re sharing several important updates - including an action item for our patient registry that will allow you to connect your data with other research studies, details about our 4th Leigh Syndrome Symposium, and more news from across our community.

We also share with heavy hearts the news of the passing of Lila, one of our brave Leigh syndrome warriors. We will continue to honor her memory in everything we do.

Warm regards,
The Cure Mito team

"You must find the place inside yourself where nothing is impossible."

- Deepak Chopra -

Important Patient Registry Action Item: Create your Clinical Research ID (CRID) and link it to your patient registry in a few easy steps!

CRID is patient-generated and allows you to link your patient registry data to your biosamples and other research studies that you maybe participating in.

Creating a CRID takes 2 MINUTES OR LESS.

Researchers: If you would like to link your studies to the registry data via CRID, please contact us to learn how.

Create a CLINICAL RESEARCH ID (CRID) by visiting www.thecrid.org.

Login to the registry at https://cords.sanfordresearch.org/account/login

Click “Update Questionnaire” - you will be able to enter CRID on the LAST question

Click SUBMIT at the end to save your updates

Important registry reminders for patients:

1) When you enroll in the registry, please ensure you complete both surveys. Without this, we cannot utilize or learn from your data.

2) Please remember to enter genetic mutation whenever available and, if possible, upload the corresponding genetic report.

3) You can enroll or update your registry information HERE. If you are having trouble logging in, please reach out to cords@sanfordhealth.org.

Save the Date!

Empower and Inspire: 4th Annual Leigh Syndrome Symposium

September 16, 2025

The Empower & Inspire Symposium is the only global virtual event dedicated to Leigh syndrome and is widely attended by the entire mitochondrial disease community. We are planning 2025 event!

To be a sponsor please contact us at info@curemito.org

Interested in speaking? Please fill out the form by clicking HERE.

Care packages

Did you know that we are sending care packages to newly diagnosed families?

If someone you love is facing a new diagnosis of Leigh syndrome, learn more and request a care package HERE.

Doctors: please share with your patients facing a new Leigh syndrome diagnosis.

We connected with the rare disease community!

In April, Kasey spoke at the Rare Advocacy Exchange hosted by Global Genes on the topic of innovative fundraising strategies.

Sophia led an interactive hands-on workshop on patient registries at the World Orphan Drug Congress.

Thank you to everyone in the rare disease community who took the time to connect with us - and to the conference organizers for the invitations to speak at your events!

We remember Lila

With deep sadness, we share the passing of Lila Marie Suzor, who was just 11 years old. Lila’s parents, Amanda and Bill Suzor, have been an important part of the Cure Mito community since 2022 - always ready to help in any way, with warmth, kindness, and a positive outlook. Bill also serves as a valued member of our Board of Directors.

Our hearts are with the Suzor family during this incredibly difficult time. We will carry Lila’s memory with us in all that we do.

In the words of Lila's parents, "Lila Suzor was the brightest of lights, lived her short life to the fullest, and was an inspiration as she continuously did it with a smile. To know Lila was to love her.".

We invite you to read more about Lila in her obituary. For those who would like to make a donation in her memory, you can do so here.

Meet us at the upcoming Mito Transfer conference!

Kasey will be at the Mitochondrial Transplantation and Next Generation Therapeutics Conference from April 27-29. If you're attending, let's connect !

Papers Highlights

Behind every diagnosis is a person. Please read a case-based narrative shares the story of a patient with stiff-person syndrome (SPS), highlighting how listening to her experience helped shape care, build trust, and improve her quality of life. Read the paper at: Patient Perspectives: Patient as Teacher | Neurology

Find more papers that maybe of interest to our community 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

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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

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

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