MitoAction
Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease
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2 events,
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The FAOD community is comprised of numerous types of FAODs. How do they compare, what enzymes are affected, and why does this lead to different treatments? Did you ever wish someone would show you a picture and really "Break things down." Join this discussion!
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Meet up with members of the Mito/FAOD community who are genetically undiagnosed. Join in to share stories, resources, and support each other on our undiagnosed journeys. |
1 event,
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If you are an adult patient or a caregiver of an FAOD you know that there are unique challenges when managing a chronic illness. This is a safe space to discuss how to navigate these ups and downs, share meaningful resources, and connect on a deeper level while creating meaningful strategies. This unique space will […] |
2 events,
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Adulting with an FAOD presents unique challenges and questions. This presentation will discuss the multidisciplinary care team, how to improve coordination of care and how clinicians safely apply “trial and error” for situations where they have no clear data.
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From infancy to the teenage years, this roundtable will be a space for MCADD families to share their experiences and learn from one another. MCADD is the most common FAOD and is largely treated through avoiding fasting. Our kids tend to be outwardly healthy most of the time, but MCADD is always there and has […] |
1 event,
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Families with FAODs exist all over the world. In this fun space we will explore: How do you manage your/your child's medical routine/diet in your own country? What are creative ways to organize traveling to other countries? How to the health care systems vary in different spaces? Where do you feel the most safe traveling? […] |
2 events,
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This roundtable discussion will bring together families and educators to explore how to successfully support students in the school setting. Participants will learn practical strategies for navigating school systems and educating teachers/staff about medical and academic needs to promote safety, inclusion, and student success.
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Navigating romantic relationships can be challenging, and having an FAOD adds additional layers to the mix. Come chat with newlyweds Alex and Tanner Hansen to discuss all the stage and components that come with partnering. Including: Important conversation to have while dating, how to plan for marriage with a disability, birth control considerations, and more! […] |
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10 events,
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Guidelines for FAODs are essential as clincians seek to collaborate and find treatments for patients with FAODs. The International Network for Fatty Acid Oxidation Research and Management (INFORM) was created to promote research and discussion into the cause, diagnosis, and management of fatty acid oxidation disorders. Recently, clincians from this group worked together to discuss/create […]
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As more women with lcFAODs are now of child-bearing age, questions of safety have arisen. Dr. Grunert will discuss an international study, in which scientists and clincians collected data on 89 pregnancies in 39 women with lcFAODs. Their current data shows that the outcome of pregnancies in lcFAOD patients was generally favorable, despite a significant […] |
8 events,
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When a child is diagnosed with an FAOD the world of a caregiver drastically changes. This presentation will draw on the insight of both a long-standing geneticist in the FAOD community and parent who is 17 years into the journey. Together they will explore topics that families face who are new to the journey. If […]
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This presentation will review the diet records and current supplements from participants in the Natural History of LCHADD Retinopathy study. Then Dr. Gillingham will discuss how to maximize micronutrient intake, what is the right amount of protein, and how to think about body weight and weight loss while also managing an FAOD. |
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