Navigating the world of mitochondrial disease Learn More 1-888-648-6228 [email protected]...

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

Transcript of Navigating the world of mitochondrial disease Learn More 1-888-648-6228 [email protected]...

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

Navigating the world of mitochondrial diseaseLearn More

www.MitoAction.org

1-888-648-6228

[email protected]

Presentation today by:Julie Gortze RNMaryBeth Hollinger RN MSN

Page 2: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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?

Patient Physician

Page 3: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

Welcome, Patient, to the Mito Community!

Are you seeking Support or Information?

Page 4: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

Support 1/6

Get support via these weekly teleconferences for newly diagnosed patients, for parents, and for adult patients and spouses. www.mitoaction.org/support

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Weekly Support Groups:

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Support 2/6

Check this section often for updated information about the research between autism and Mito. www.mitoaction.org/autism

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Mito-Autism Task Force:

Page 6: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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

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Advocacy:

Page 7: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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

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The Matthew Harty Camper Fund:

Page 8: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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

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Marcel's Way Family Fund:

Page 9: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

Support 6/6

Volunteers available 24/7 to respond to calls for support, resources, or just a listening ear.www.mitoaction.org/mito-411

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Mito 411 Support:

Page 10: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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/blog

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iPhone/iPod App and iTunes Podcast Library:

Page 11: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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

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Living Well with Mitochondrial Disease: A handbook for Patients,Parents, and Families

Page 12: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

Information 3/4

Refer to this list when seeking a physician who has expertise in the field of mitochondrial medicine. www.mitoaction.org/specialists

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Physicians List:

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Information 4/4

Help kids with mitochondrial disease succeed in school with this comprehensive video. www.mitoaction.org/energy-4-education

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Energy 4 Education:

Page 14: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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

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Page 15: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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

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Page 16: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

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/guide

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Page 17: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

Protocols for Mito Patients

From vomiting and dehydration to surgery, fever or infection, manage these challenges better with clinical protocols. www.mitoaction.org/protocol

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Page 18: Navigating the world of mitochondrial disease Learn More  1-888-648-6228 info@MitoAction.org Presentation today by: Julie Gortze RN MaryBeth.

Mito Toxic Medication List

Avoid adverse effects by consulting this list of medications that may have detrimental effects on the mitochondria. www.mitoaction.org/toxins

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