Wishing you happiness and joy this holiday season! |
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We are thrilled to introduce you to Ashley Welborn, the new Mitochondrial Care Network (MCN) Coordinator. The MCN is an important collaboration between MitoAction, UMDF and the Mitochondrial Medicine Society (MMS) to implement standards of patient care through a network of experienced physicians at medical institutions across the country.
The list of MCN centers can be found here.
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MitoAction is working diligently to keep our community safe and connected with vital updates related to the COVID-19 global outbreak. We will continue to share recommendations from the CDC, NIH and other reputable sources to help you and your family remain safe and protected.
Visit our website to stay updated on the latest news as it relates to patients with mitochondrial disease.
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Our new podcast series Energy in Action consists of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts 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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Mito411 offers live, one to 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 road associated with “Mito.” We know the holidays can be especially difficult and we want you to know that you are never alone on your journey!
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 (web based version 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 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:
- January 8th, 2021 - 12:00pm EST
- January 22nd, 2021 - 12:00pm EST
- January 29th, 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 Fatty Acid Oxidation Disorder (FAOD) Support Call Dates:
- January 14th, 2021 - 7:00pm EST
- February 11th, 2021 - 7:00pm EST
- March 11th, 2021 - 7:00pm EST
To participate in the FAOD support calls, RSVP here! |
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Our virtual MitoSocials help connect families with other mito families in their local communities. These low-key, relaxed gatherings allow mito families to meet each other, share stories, give and get support, and realize they’re not alone on this journey. We want to help you get support closer to home, and are hopeful that a MitoSocial will offer just that.
Upcoming MitoSocials:
- January 21st, 2021 - 5:00pm PST (California) - RSVP Here!
Visit our website to keep updated as new virtual MitoSocials are added regularly. If you'd like to see one in your area, please email us at info@mitoaction.org.
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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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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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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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If you missed our December Expert Series presentation with David Keane from Gene DX, you can now listen to it on our website and podcast channels.
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MitoAction is honored to have partnered with the Muscular Dystrophy Association and other rare disease organizations to sign a letter in support of the adult neuromuscular disease community being able to receive access to a COVID-19 vaccine during the same phase as other individuals with high-risk medical conditions. |
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There are just a few more weeks 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 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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