Navigating the world of mitochondrial disease Learn More 1-888-648-6228 Presentation today by: Julie Gortze RN MaryBeth.

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Presentation transcript:

Navigating the world of mitochondrial disease Learn More Presentation today by: Julie Gortze RN MaryBeth Hollinger RN MSN

Welcome to MitoAction! Welcome to MitoAction. We strive to improve the quality of life for all affected by mitochondrial disease through support, education, and advocacy. Are you a patient or a physician? PatientPhysician

Welcome, Patient, to the Mito Community! Are you seeking Support or Information?SupportInformation

Support 1/6  Get support via these weekly teleconferences for newly diagnosed patients, for parents, and for adult patients and spouses. Continue Weekly Support Groups:

Support 2/6  Check this section often for updated information about the research between autism and Mito. Continue Mito-Autism Task Force:

Support 3/6  Representing the voice of the patient and addressing challenges such as medical child abuse, insurance, access to clinical trials, and more. Continue Advocacy:

Support 4/6  Partnerships with camps around the country provide children with mitochondrial disease the opportunity to go to camp in a safe, medically supportive environment. Continue The Matthew Harty Camper Fund:

Support 5/6  The MWFF gives one-time grants to families with mitochondrial disease in need of assistance for things like durable medical equipment, medications not covered by insurance, travel to medical appointments, etc. Continue Marcel's Way Family Fund:

Support 6/6  Volunteers available 24/7 to respond to calls for support, resources, or just a listening ear. Back to Start Mito 411 Support:

Information 1/4  Track your symptoms, daily intake, meds, and more using our Mito App. Search MitoAction in the iTunes/App store  Gain knowledge through recordings of our monthly toll-free teleconferences with expert speakers on topics important to the Mito Community. Continue iPhone/iPod App and iTunes Podcast Library:

Information 2/4  Read Cristy Balcells’ must-have book to live well with Mito – from diagnosis to treatment. Visit for more information Continue Living Well with Mitochondrial Disease: A handbook for Patients, Parents, and Families

Information 3/4  Refer to this list when seeking a physician who has expertise in the field of mitochondrial medicine. Continue Physicians List:

Information 4/4  Help kids with mitochondrial disease succeed in school with this comprehensive video. Back to Start Energy 4 Education:

Thank you, Dr., for advocating on behalf of your Mito Patient! Continue

Mito Clinical Conferences  Doctors and nurses advance their knowledge about identifying mitochondrial diseases, managing adults and children with mitochondrial disorders, and assisting patients with treatment options and coordinated care. Continue

Symptom Guide for Clinicians  Doctors and healthcare providers use this online guide to learn about and better manage the complex symptoms of Mito. Visit Continue

Protocols for Mito Patients  From vomiting and dehydration to surgery, fever or infection, manage these challenges better with clinical protocols. Continue

Mito Toxic Medication List  Avoid adverse effects by consulting this list of medications that may have detrimental effects on the mitochondria. Back to Start