Join us for our new podcast series, Energy In Action. Energy in Action will consist of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts will give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research and the advancement of therapies.
If you would like to be a guest or suggest a topic, please email us at info@mitoaction.org.
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The annual town meeting is the mitochondrial disease community's kick off to the new year where we share all of our successes and what is in store for the coming 12 months! Join us to hear from patient advocacy organizations, clinicians, researchers and our pharmaceutical partners from around the globe to learn about programs and opportunities for patients and families affected by mitochondrial disease.
Advanced registration is required, so click below to reserve your spot!
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The holiday season often brings an unwelcome guest — stress, especially during the times of COVID-19.
The holidays present a dizzying array of demands — parties, shopping, baking, cleaning and entertaining, to name just a few. But with some practical tips, you can minimize the stress that accompanies the holidays. You may even end up enjoying the holidays more than you thought you would.
Click here for some tips to help prevent holiday stress this season!
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We are thrilled to partner with Kendra Scott this Giving Tuesday for another "Kendra Gives Back" shopping event. When you shop between Dec. 1 - Dec. 2 using our give back code (details coming soon), 20% of your purchase is donated back to MitoAction! Visit www.kendrascott.com to start building your holiday wish list! |
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As you're thinking about holiday shopping, we wanted to remind you of a way for you to support the mito community just by doing your regular shopping. We have partnered with Shop with Scrip, a program where you purchase gift cards from your favorite retailers to turn everyday shopping into earnings for MitoAction! Shop from the comfort of your own home with e-gift cards for MitoAction this holiday season. |
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Need Support? You are not alone.
Mito411 offers live, one on one support, education, advocacy, and a direct connection with someone who understands. Mito411 volunteers speak with callers needing support and share similar experiences on how to live day to day with mito. The personal connection can really help during the long and often difficult journey associated with “mito.”
Our volunteers are adults with mito, parents of children with mitochondrial disorders, and caregivers. Although volunteers can speak from personal experience and have access to many resources and educational material, medical advice cannot be offered.
Reach us by phone at (888) MITO-411
or by email at mito411@mitoaction.org
or schedule one-on-one support by clicking here!
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Whether you need help managing your mitochondrial disease symptoms or if you care for someone with mitochondrial disease, MitoAction mobile is here for you. Welcome to the first and only HIPPA compliant digital health platform (website and mobile app) specifically for managing life with mitochondrial disease.
MitoAction Mobile will help you manage mitochondrial disease each step of the way by allowing you to:
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Track current mitochondrial disease symptoms and treatments to see what works and what doesn’t
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Access and view past health history on demand
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Manage future appointments and tasks, to avoid obstacles and triggers
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Our weekly support calls are a safe and confidential place to connect with other families impacted by mitochondrial disease, share stories, ask questions and offer and receive support.
Upcoming Mito Support Call Dates:
- November 20th - 12:00pm EST
- December 11th - 12:00pm EST
- December 18th - 12:00pm EST
- January 8th, 2021 - 12:00pm EST
To participate in the mito support calls, call the toll-free teleconference number 1-866-414-2828, then enter the participant code: 017921#
Upcoming FAOD Support Call Dates:
- December 10th - 7:00pm EST
- January 14th, 2021 - 7:00pm EST
To participate in the FAOD support calls, RSVP here! |
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During these unprecedented times of COVID-19, MitoAction would like to help you stay safe and would like to invite you to join us to mask up for mito with us!
Click here to order your MitoAction masks! Visit our website for assistance in navigating COVID-19 and mito!
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Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts. |
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December Mito Expert Series |
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Friday, December 4th
12:00pm EST / 9:00am PST
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Join MitoAction and David Keane, Genetic Diagnostic Specialist at GeneDX to discuss genetic testing. Advanced registration is required, so click below to reserve your spot! |
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If you missed our November Mito Expert Series presentation with Matt Klein and Francesco Bibbiani from PTC Therapeutics, you can now listen to it on our website and podcast channels.
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There is still plenty of time for you to gather your family and friends and come together to raise awareness and #moveformito! No matter how you participate, you are making a difference in the lives of patients and families who are impacted by mitochondrial disease. Don't forget to check out the prizes you can earn by fundraising! Email us at info@mitoaction.org for help in organizing your event! |
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Research & Clinical Trials |
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A Study to Evaluate Efficacy and Safety of Vatiquinone for Treating Mitochondrial Disease in Participants With Refractory Epilepsy (PTC743 -- MIT-E).
PTC Pinpoint is a program that provides genetic testing and counseling for people who may have AADC deficiency.
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If you are living with a type of LC-FAOD, you may be interested in a new study sponsored by Ultragenyx in partnership with PicnicHealth, a digital health company.
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The objective of this research study is to conduct a pivotal phase 3 trial of treatment with the investigational drug dichloroacetate (DCA) in young children with deficiency of the pyruvate dehydrogenase complex (PDC).
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Khondrion recently announced that it received a rare pediatric disease (RPD) designation from the United States Food and Drug Administration (FDA) for sonlicromonal for the treatment of patients with MELAS syndrome.
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