Patient Registry, C-Path Mito Taskforce, Our New Amazon Storefront, and more!

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

Welcome to our October 2024 Newsletter! In this newsletter you will find latest updates on our patient registry, updates on the C-Path Mito Taskforce, news about our new Amazon storefront with products recommended by our families, and much more.

As always, we are hopeful that this newsletter will leave you a little more uplifted and inspired.

Warm regards,
The Cure Mito team

"The most challenging times bring us the most empowering lessons."

- Karen Salmansohn -

R.I.P Sammy Basso

We are heartbroken by the loss of Sammy Basso just two weeks after being a keynote speaker at our symposium.

Sammy left us with beautiful words such as these: "A genetic disease does not stop us from growing in this world, from being helpful to others, or reflecting the immense mystery of life itself."

Sammy's powerful message about the importance of every individual will remain with us always. Please hear Sammy's inspiring talk HERE.

Join the registry by December 31st to have your data included in our next publication

Since launching Leigh syndrome global registry three years ago, we have remained committed to ensuring it delivers real, tangible results while keeping our community informed every step of the way.

We are getting ready to work on our next publication, please join the registry by December 31st for your data to be included. If you have enrolled a while ago, this is also a great time to check and update your information!

Join the Registry

Our most recent poster, Standardizing Leigh Syndrome Patient Registry Data to the OMOP Common Data Model by Using Open Source R, created in collaboration with Sumptuous Data Sciences, is presented at the 2024 OHDSI Global Symposium Collaborator Showcase. To view poster in full size please click HERE.

We have our own Amazon Storefront!

We now have our own Amazon storefront with products our families use, books, and self-care items for moms!

Shop regular amazon prices with a small portion of each sale benefiting Cure Mito, please check it out HERE.

Have your own favorite products? Please share with us!

Thank you for fundraising

Thank you to the Green family, who is holding a walk on November 3rd to honor and remember Bradlee. Learn more HERE.

Thank you Green family and Aqua Duks Swim School for hosting Pumpkin Wars in support of the Cure Mito Foundation. Learn more HERE.

Thank you to Mashall family and Shadco, LLC., a provider of demolition and excavation services, for their generous support of the Cure Mito Foundation. They are donating $1.00 for every block manufactured and $0.10 per foot of mainline water and gas projects completed. Learn more HERE.

Lime Smile for Leigh Syndrome

Thank you, Suzor family, for organizing a virtual fundraiser and awareness campaign, Lime Smile for Leigh Syndrome! Why Lime Smile? Our kids have different abilities, but they smile bright and make us smile too. And why not do it in Mito Green.

Learn more HERE.

Participate and share your smiles!

C-Path Mito Taskforce Updates

We are super excited to share that our Mito taskforce with C-Path is growing with TGen as our newest member. The Translational Genomics Research Institute (TGen) is a non-profit genomics research institute based in Phoenix, Arizona. The mission of TGen is to make and translate genomic discoveries into advances in human health. Learn more about the taskforce HERE.

Meet us in Boston

Sophia is speaking on the topic of "Patient registries: Thinking beyond the data collection" at the 4th Mitochondrial Dysfunction Drug Development Summit in November in Boston. she will discuss:

Cure Mito Leigh syndrome patient registry and what makes it unique
Assessing registry data for regulatory use
A new registry - a meaningful contribution or a redundant effort?

We remember Ana

It is with deep sadness that we share the passing of Ana due to Leigh syndrome. Ana brought light and joy to every room she entered. She was smart, witty, and had a determined spirit, always striving to do as much as a healthy child despite her diagnosis of SURF1 Leigh Syndrome at 21 months.

Our thoughts and condolences go out to Ana's family during this incredibly difficult time. Donations in Ana's memory can be made HERE.

Check out these recently published papers!

Fetal and obstetrics manifestations of mitochondrial diseases

Mitochondria play a crucial role in embryonic and fetal development, and dysfunction in mitochondrial function can lead to developmental defects or pregnancy complications. The review by Dr. Dario Brunetti and team highlights evidence suggesting that mitochondrial diseases may affect fetal development, underscoring the need for targeted genetic diagnosis during pregnancy.

Disease models of Leigh syndrome: From yeast to organoids

In a new review by Dr. Alessandro Prigione and his team highlight various disease models of Leigh syndrome used over the past 30 years, including yeast, flies, zebrafish, mice, and patient-derived stem cells, which together help uncover the complexities of LS and open doors for potential treatments.

What do family caregivers of patients with life-threatening diseases need from healthcare professionals? A qualitative study

A new study identified core needs of family caregivers across healthcare settings: feeling seen and valued, experiencing trust in care, and receiving guidance and security.

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

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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