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

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

1 Navigating the world of mitochondrial disease Learn More www.MitoAction.org 1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth Hollinger RN MSN

2 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

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

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

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

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

7 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. www.mitoaction.org/camp www.mitoaction.org/camp Continue The Matthew Harty Camper Fund:

8 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. www.mitoaction.org/marcels-way-family-fund www.mitoaction.org/marcels-way-family-fund Continue Marcel's Way Family Fund:

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

10 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. www.MitoAction.org/blogwww.MitoAction.org/blog Continue iPhone/iPod App and iTunes Podcast Library:

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

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

13 Information 4/4  Help kids with mitochondrial disease succeed in school with this comprehensive video. www.mitoaction.org/energy-4-education www.mitoaction.org/energy-4-education Back to Start Energy 4 Education:

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

15 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. www.mitoaction.org/clinicalconference www.mitoaction.org/clinicalconference Continue

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

17 Protocols for Mito Patients  From vomiting and dehydration to surgery, fever or infection, manage these challenges better with clinical protocols. www.mitoaction.org/protocolwww.mitoaction.org/protocol Continue

18 Mito Toxic Medication List  Avoid adverse effects by consulting this list of medications that may have detrimental effects on the mitochondria. www.mitoaction.org/toxinswww.mitoaction.org/toxins Back to Start


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