MitoAction
Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease
Calendar of Events
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Expert Series: Updates on Cardiomyopathy: Diagnosis and Management in FAOD
Expert Series: Updates on Cardiomyopathy: Diagnosis and Management in FAOD
Dr. Chatfield will discuss cardiomyopathy and LC-FAODs, share current research, the direction of which it is heading, and treatment strategies. She will also explore prolonged-QT and electrical issues, how this interacts with metabolic crisis, and ways for doctors to monitor the heart.
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Weekly Support Call
Weekly Support Call
Spend an hour with MitoAction on Fridays for our weekly support group calls!Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized […]
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Sandra K Russell Derby Day Benefit for Mito
Sandra K Russell Derby Day Benefit for Mito
Mark your calendars and plan to join MitoAction for the hottest Derby Day event in Boston! Big hats, bow ties, incredible silent and live auction items, signature mint juleps, and the most exciting two minutes in sports!Click the links below to learn more and register!
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FAOD Monthly Evening Support Call
FAOD Monthly Evening Support Call
Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs.
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Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles
Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles
Patients with progressive or static neuromuscular disease, and certainly mitochondrial disease, can cause significant difficulty with airway clearance. This can be a problem on an everyday basis when a patient is well, but will become a much larger problem when a patient is acutely ill. We will discuss the link between bulbar/upper airway function, respiratory […]
Weekly Support Call
Weekly Support Call
Spend an hour with MitoAction on Fridays for our weekly support group calls!Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized […]
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Celebrate Mother’s Day
This Mother’s and Father’s Day, we’re honoring the incredible parents in our mitochondrial disease community—the fierce advocates, tireless caregivers, and everyday heroes who show up with love and strength, no matter the challenges. At MitoAction, we know how much these parents mean to their families and our entire community. That’s why, when you make a […]
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Expert Series: Serial Casting and Toe Walking
Expert Series: Serial Casting and Toe Walking
Do you or your child struggle with toe walking? Are you curious about why it occurs and where the concerns lie? Is toe walking reversible and what strategies do physical therapists to help with reduce it? Join Pamela Tucker as she explores these questions while also introducing us to a relatively new strategy called, "Serial Casting." Together we will […]
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Weekly Support Call
Weekly Support Call
Spend an hour with MitoAction on Fridays for our weekly support group calls!Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized […]
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Our Space: A space for young adults with Mito and FAODs to connect and network
Our Space: A space for young adults with Mito and FAODs to connect and network
Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it's own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community.Don't […]
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MitoChampions Meeting
MitoChampions Meeting
Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To […]
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FAOD Support: Exploring the Younger Years
FAOD Support: Exploring the Younger Years
Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD!
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Weekly Support Call
Weekly Support Call
Spend an hour with MitoAction on Fridays for our weekly support group calls!Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized […]
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Wondering Wednesdays with Genetic Counselor
Wondering Wednesdays with Genetic Counselor
Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone.
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1 event,
Weekly Support Call
Weekly Support Call
Spend an hour with MitoAction on Fridays for our weekly support group calls!Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized […]
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