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MDA Clinical & Scientific Conference |
If you are attending the MDA Clinical & Scientific Conference this week, be sure to stop by and visit the MitoAction booth in the exhibit hall.
To learn more about the conference or view the agenda, click here. |
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MitoAction's CEO, Kira Mann will be presenting on Utilizing Technology to Better Understand Mitochondrial Disease & the Patient Journey at the Mitochondria-Targeted Drug Development Conference in April.
Click here to learn more and see the full agenda! |
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Check out the brand new MitoAction Store! Grab your favorite classic designs and check out some new ones!
Do you have a design idea? Send it our way, as we are always looking for new items to offer!
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We are thrilled to share a new initiative that we've been working on, Another Helping! Another Helping is being launched by 11-year old Emma whose dad is affected by mitochondrial disease. Through this effort, Emma combines her love for baking, helping others, and supporting patients with mitochondrial disease! Purchase homemade cupcakes (if you're local to Eagle, ID) or donate your cupcakes to local front-line workers. All proceeds benefit MitoAction's programs and services.
Stay tuned to our social media and website for further details! Ordering will go live on Wednesday, March 17th and the first cupcake pick-up date will be Saturday, March 20th!
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Considerations for Living and Eating with LC-FAOD |
Date: Wednesday, 31, 2021
Time: 6pm PT / 8pm CT / 9pm ET
Registration: Click here.
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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. MitoAction Mobile is the only HIPPA compliant digital platform specifically for managing the mitochondrial disease lifestyle while also providing critical data to clinicians and researchers in their quest to develop therapies.
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:
- March 19th - 12:00pm EST
- March 26th - 12:00pm EST
- April 9th - 12:00pm EST
- April 16th - 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 25th - 3:00pm EST
- April 8th - 8:15pm EST
- April 22nd - 3:00pm EST
To participate in the FAOD support calls, RSVP here! |
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Join Mito Warriors Jamie Buryanek, Gordon Freedman, and Adam Johnson on Sunday, March 21 at 12:00pm EST for a support call just for the men in the mitochondrial disease community. Spend an hour talking about your challenges and your victories along your journey and discuss ideas about moving forward as a community.
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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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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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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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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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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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MitoAction is partnering with Hear Your Song to allow our mito kids and teens (ages 6-18) to write and record their own song — no prior musical experience required! All you need is an idea! You can write a song about your family and friends, things you love, struggles you may face – anything you want to use music to share!
Visit our website to learn more and sign-up for a songwriting session!
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The entire MitoAction team took part in Rare Across America from February 22nd - March 5th, advocating in their home states to raise our voices with our local and federal legislators on the topics that matter most to the mitochondrial and rare disease communities. We will have more news and updates about MitoAction's advocacy initiatives in the coming months. To learn more about how you can join the cause, email us at info@mitoaction.org. |
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After going virtual in 2020, we are thrilled to bring the middle schoolers and high schoolers together again for the 8th annual Matthew Harty Mito Classic at the North Andover Youth Center in North Andover, MA! Also, as we did last year, we will be announcing in the coming weeks some opportunities to get involved no matter where you live to #moveformito.
Due to Covid-19 restrictions, we have had to make some changes in the way the games are handled, but we will have just as much fun as always.
To register or learn more, click here!
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Live from virtual Churchill Downs on May 1, 2021, MitoAction brings you the most exciting “60 minute” fundraising event experience. Patients, caregivers, family members, donors, corporate sponsors and friends of MitoAction will come together from across the U.S. to support families affected by mitochondrial disease.
Attendees who were once restricted by geography and travel will now be able to join SKR Derby Day and our reach will be expanded to a national audience. There will be something for everyone to enjoy – Derby inspired drinks, great fun and entertainment, all from the comfort of your home!
Registration will open soon!
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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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A Study of the Efficacy and Safety of 24 Week Treatment With REN001 in Patients With Primary Mitochondrial Myopathy (STRIDE)
A Prospective Study of the Disease Characteristics of Adult Patients With LC Fatty Acid Oxidation Disorders (FORWARD)
This is a Phase 1, open-label, multiple-dose study of the safety and tolerability of 2 dose levels of REN001 in subjects with fatty acid oxidation disorders (FAODs) with confirmed mutations in the Carnitine palmitoyltransferase II deficiency (CPT2), Very long-chain Acyl-CoA dehydrogenase deficiency (VLCAD), Long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHAD) or Trifunctional Protein Deficiency (TFP).
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