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International Metabolic Conference |
Save the date for the 2nd annual International Metabolic Conference hosted by MitoAction & INFORM for families affected by fatty acid oxidation disorders. Visit our website and Facebook Page to stay updated on conference details! |
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NIH COVID-19 Vaccine Survey |
The NIH (National Institutes of Health) Metabolism, Infection and Immunity (MINI) Section invites parent/caregivers of children with mitochondrial disease to participate in a NEW SURVEY about the COVID-19 vaccine for children with Mitochondrial Disease. Responding to this survey only takes 10-15 minutes and answers will remain anonymous.
You are eligible to participate in this survey if you are a parent/caregiver of a child with mitochondrial disease and older than 18 years of age.
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Probably Genetic, a San Francisco-based genetics company, just launched a sponsored genetic testing program for patients with suspected mitochondrial diseases that provides free whole exome testing to eligible patients.
Click here to take a short quiz to see if you qualify.
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Hear Your Song Joins MitoAction to Offer Collaborative Songwriting Opportunities to Kids & Teens! |
In March, Hear Your Song will be hosting virtual songwriting sessions for MitoAction kids and teens ages 6-18! Hear Your Song volunteers will help you write your own song — no prior musical experience required. Afterwards, your song will be professionally recorded and you’ll hear your lyrics and musical ideas come to life!
To learn more, click below to join an informational session:
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Our 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:
- February 19th - 12:00pm EST
- February 26th - 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:
- March 11th - 8:15pm EST
- April 8th - 8:15pm EST
To participate in the FAOD support calls, RSVP here! |
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Our virtual MitoSocials help connect families with other mito families. These low-key, relaxed virtual 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.
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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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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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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These presentations will be held on the 3rd Monday of each month at 10:00am EST starting in February and running through June.
The first lecture series will feature Meicheng Wang, PharmD from the University of Pittsburgh / UPMC Children’s Hospital of Pittsburgh and Daniela Karall, MD from the Medical University of Innsbruck.
Click here to join the first lecture.
Meeting ID: 945 2549 7530 , Passcode: 475453
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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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This is a Phase 3, prospective, multicenter, open-label treatment study of the efficacy and safety of MT1621 in patients with thymidine kinase 2 deficiency (TK2d). In order to be eligible for this study, participants must have genetic confirmation of TK2d and must not have ever received MT1621 or nucleos(t)ides before entering the study.
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