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International Metabolic Conference

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Join MitoAction and the International Network for Fatty Acid Oxidation Research and Management (INFORM) for the 3rd Annual International Metabolic Conference for Fatty Acid Oxidation Disorders (FAODs) held at the Wyndham Pittsburgh University Center Hotel in Pittsburgh, PA on July 22, 23, & 24, 2022.

In partnership with Dr. Jerry Vockley and INFORM, MitoAction will assemble leading experts to present to families, caregivers, family members and clinicians.  The focus of the International Metabolic Conference is for families to learn more about disease management, current clinical trials, nutrition and the social needs of caring for those with a rare metabolic disorder.  This is a great opportunity for families to meet one another in person, spend some time networking and have the opportunity to interact with professionals who specialize in metabolic disorders.

We will hear from a variety speakers: medical professionals, dietitians, social workers, advocates and genetic counselors.

Everyone in your entire family will have a meaningful way to connect, engage and learn!

There is no cost to attend for patients, caregivers and family members.  We encourage medical professionals to join the conference for a small fee of $25.

Registration includes Friday evening reception, breakfast & lunch on Saturday & Sunday.

Click here to register!

– Hotel reservations and in-person registrations must be completed no later than June 25, 2022

– The registration deadline to receive an event t-shirt is June 1, 2022

Hotel reservations can be made online directly by clicking here or you can call the Wyndham Pittsburgh directly at (412) 682-6200 and mention MitoAction or International Metabolic Conference to receive the group rate of $154.00 / night!

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Click on the image of each speaker to view their bio.
Speaker Schedule

Sunday, July 24

9:30am – Transitioning from Pediatric to Adult Care

1:00pm – Clinician Panel Discussion

Speaker Schedule

Saturday, July 23

9:30am – When it is Not Your FAOD; Getting Medical Support When There is a Dual Diagnosis or Complex Care

4:00pm – Clinician Panel Discussion

Speaker Schedule

Saturday, July 23

10:30am – How to Approach Sports and Exercise with an FAOD – In this presentation, Dr. Gillingham will discuss why exercise is important for patients with FAODs and provide some practical tips how to safely incorporate exercise into your routine at different ages.  She will briefly discuss different types of exercise and how to advocate for your child or yourself with coaches and teachers. Finally, she will discuss some nutrition tips for fueling exercise and promoting recovery after exercise.

4:00pm – Clinician Panel Discussion

Speaker Schedule

Saturday, July 23

8:45am – Understanding the Effect of FAODs on the Liver and Immune System – The liver is a critical hub that regulates whole-body metabolism, processing fatty acids for several important functions. The immune system has only recently been found to rely on fatty acids for energy. This presentation will cover the basic science around how various fatty acid oxidation disorders affect the liver and can sometimes push the immune system into an inflammatory state, and finally, what this might mean for patients’ liver health and immune system in the long-term.

4:00pm – Clinician Panel Discussion

Speaker Schedule

Saturday, July 23

1:45pm – “How to Talk the Talk While You Walk the Walk”: How to Explain FAODs to People/Professionals Who Don’t Know About FAODs – The study of FAODs is a science. How to talk about FAODs is an art. If you talk about symptoms and names of tests and treatments as a series of facts, then an FAOD becomes just another disease to memorize. Learn the physiology well; it’s the story of how the human body works (or doesn’t work). If you can convey that first, the symptoms and management follow behind more easily.

Speaker Schedule

Sunday, July 24

8:45am – Pandemic Lessons Learned from the Mitochondrial Disease Community – The COVID-19 pandemic has presented many challenges to the mitochondrial disease community. It has also offered researchers an opportunity to understand the impact of viral infection on a medically vulnerable community. This talk will present clinical research findings regarding COVID-19, viral infections and mitochondrial disease.

1:00pm – Clinician Panel Discussion

Speaker Schedule

Friday, July 22

5:30pm – Ultragenyx Community Updates

Speaker Schedule

Saturday, July 23

1:00pm – HITT Exercises and Stretching for all FAODs – It’s time to move! This session reviews the differences between and indications for HIIT (High Intensity Interval Training) versus MICT (Moderate Intensity Continuous Training), as well as briefly describes the impact HIIT exercise has on the body. Using videos and interactive activities, the presenter brings the audience through a HIIT workout routine to promote optimal cardiovascular fitness and overall health.

4:00pm – Clinician Panel Discussion

Speaker Schedule

Friday, July 22

4:15pm – Community Update: “Fatty Acid Oxidation Treatments: Growing Options” – Triheptanonin is currently the only drug approved for treatment of fatty acid oxidation disorders, and it’s use is restricted to long chain FAODs. This presentation will review new drugs under development in my lab for long chain FAODs and clinical trials currently in the planning stage for new treatments for MCAD deficiency.

Saturday, July 23

3:00pm – Inborn Errors of Metabolism and Puberty – Puberty is often a time of new instability in patients with fatty acid oxidation disorders due to changing body’s changing hormonal milieu and energy requirements. This talk will review the basic physiology of puberty, it’s impact on FAODs, and provide ample time for discussion of these issues.

Sunday, July 24

1:00pm – Clinician Panel Discussion

Speaker Schedule

Sunday, July 24

10:15am – Round Table Discussion: Sibling Support

12:15pm – Roadmap to Self-Care: Support Families and Caregivers of Children with Chronic Illnesses – A diagnosis of a chronic health condition or illness significantly impacts the lives of the children and their families.  This presentation will address approaches to navigating some of the challenges faced by families while caring for ill loved ones.  The presenter will review dynamics in families that contribute to caregiver stress and fatigue and work with participants to develop a roadmap or understanding of self-care.  Families will also develop a self-care plan to include tools, techniques, and resources presented.

1:00pm – Clinician Panel Discussion

Speaker Schedule

Sunday, July 24

8:00am – Introducing Food and Mealtime & How to Watch Fasting Without Making it Weird – This presentation is intended for families with toddlers/elementary age kids and will provide practical ideas for making avoiding fasting not weird, tips for trying new foods, and transitioning off of g-tube feedings.

1:00pm – Clinician Panel Discussion

As we prepare for the International Metabolic Conference in July, we would like your help putting together a cookbook filled with heart-healthy and /or low-fat recipes for individuals with fatty acid oxidation disorders!

Thank You to Our 2022 Sponsors!
Co-Host

Presenting Sponsor
Gold Sponsor
Silver Sponsor
Exhibitors

To receive information on the conference, please complete this form.  To stay connected to MitoAction, please join our MitoAction FAOD Families Facebook Group and “like” the International Metabolic Conference Facebook Page.