Giving Tuesday, Patient Registry Updates, Holiday Tips, and More!

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

Welcome to our November 2024 Newsletter! As we approach the end of the year, this month's newsletter highlights our Giving Tuesday campaign, a reminder to join the patient registry, holiday tips for families and the latest updates from our advocacy and research efforts.

While we celebrate this year’s progress, we also recognize that each of the past several newsletters, including this one, has included news of a loss of a child in our community. These heartbreaking losses inspire us to strengthen our efforts to bring hope, support, and solutions to families and those affected.

Warm regards,
The Cure Mito team

"Courage is nothing more than taking one step more than you think you can."

- Holly Lisle -

Make a Difference this Giving Tuesday!

Giving Tuesday is coming up on December 3rd!

This year, thanks to the support of so many, we have continued funding vital research for Leigh syndrome, expanded our patient registry, hosted our 3rd annual Leigh syndrome symposium, provided care packages to newly diagnosed families, and so much more!

We have been recognized as a top-rated nonprofit on Great Nonprofits for 3rd consecutive year and have been chosen among a select group of rare disease organizations invited to join the prestigious Chan Zuckerberg Initiative (CZI) Rare As One Network.

Have we made a difference in your life this year? This Giving Tuesday, show your support and help us continue our mission!

Make a Difference

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

Please join the registry by December 31st for your data to be included in our next publication. If you have enrolled a while ago, this is also a great time to check and update your information!

Joining the registry involves responding to two brief surveys, taking no longer than 30 minutes.

Learn More

Thank you for fundraising

Thank you to the Green family Aqua Duks Swim School who held a walk honoring Bradlee and Pumpkin wars this month.

Thank you to the Mumbaikar community in Dallas-Fort Worth, who organized a Taare Zaameen Par, a children’s musical showcase benefiting Cure Mito Foundation. Together, they raised $30,000, including a generous $10,000 matching donation from an anonymous donor.

Thank you to the Marshall family for the Pampered Chef fundraiser!

Thanks to many families who set up virtual campaigns.

We could never make it without you all!

We participated in the 4th Mitochondrial Dysfunction Drug Development in Boston!

Sophia talked about our Leigh Syndrome Patient Registry and our collaboration with the Critical Path Institute on the Mito Taskforce, and its vital role for our community.

She also took the opportunity to reconnect with our friends and partners!

Thank you to the organizers for this opportunity.

We remember Kshiti

We are heartbroken to share yet another loss in our community. Kshiti has been a part of Cure Mito family since being diagnosed with SURF1 Leigh Syndrome in 2018 when she was 16 months old. Our thoughts are with Kshiti's family during this very difficult time. Donations in memory of Kshiti can be made HERE.

Ordering Holiday Cards?

Get 20% off your purchase with Minted with code FUNDRAISECUREMITO. Minted will donate 15% of your purchase back to Cure Mito. Order your cards HERE.

Do you Need Support?

If you’re seeking support, especially during the holidays, we invite you to explore our Support page. There, you’ll find downloadable guides, books for kids and adults, and a wealth of resources that have helped others on similar journeys.

If you need someone to talk to, please don’t hesitate to reach out—we’re here for you.

Check out these recently published papers!

Being the other child - A systematic review on the quality of life and mental health of siblings of children with rare diseases.

Siblings of children with rare diseases often experience reduced Quality of Life and mental health challenges due to psychosocial stressors. This review highlights the need for healthcare providers to address these impacts and explores research gaps in supporting siblings' well-being.

Different diseases, different needs: Patient preferences for gene therapy in lysosomal storage disorders, a probabilistic threshold technique survey.

A new study explored patient preferences and risk tolerance for gene therapy among individuals affected by lysosomal storage diseases with varying prognoses and treatment options. Findings revealed that those with more severe conditions and limited therapeutic options were more risk-tolerant, while those with better prognoses were more cautious. The study highlights the importance of incorporating patient preferences into the development of innovative therapies to ensure alignment with their needs and expectations.

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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