PFD Beyond Mealtime: A Family Panel

April 22, 2022 1:45 pm

The Family Advisory Council's (FAC) concurrent session, Impacts on the Family Beyond Mealtime, encompasses multiple topics that impact families of children with PFD, with each topic presented by a different caregiver who has in-depth experience on the subject matter. These topics include: impacts to the family in the school environment, impacts on siblings and extended family, challenges traveling, insurance coverage, economic impacts, changes in course of care, and impacts of COVID.

Learning Objectives
Upon conclusion of the presentation each participant will be able to:

  • List 3 challenges families face in implementing care for a child with PFD.
  • Identify 2 external impacts to the family of the prescribed course of care.
  • Apply 2 strategies learned here to integrate family input in planning course of care.

Speakers

  • Brandt Perry

    Brandt Perry

    Brandt Perry is a native of Arizona, where he and his wife Krya raise three energetic children – Austin (8), Brayden (6) and Sydney (3). The family's first encounter with Feeding Matters came in 2016 when 18-month-old Brayden was diagnosed with Eosinophilic Esophagitis (EoE) and severe food allergies and the Perrys were searching for information to navigate the new path in front of them. Brayden eats 100% through his G-tube, but that doesn’t slow him down. Brayden's younger sister, Sydney was diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES) and numerous food allergies. She also has a G-tube but eats orally as well, which challenges Brandt and Krya to expand their culinary creativity. Fortunately, big brother Austin provides great support to the whole family and simplifies meals by preferring mac & cheese or pizza.

    Brandt began serving on Feeding Matters Family Advisory Council began in 2018 and as a Power of Two Coach in 2019. Outside of his involvement with Feeding Matters, Brandt’s philanthropic involvement includes serving Habitat for Humanity, Scottsdale Active 20-30 Club and Phoenix Children’s Hospital Leadership Circle. These actions are driven by Brandt’s belief that we have a responsibly to give back, to leave the world better than we found it.

    Brandt earned a Bachelor of Science degree in Accounting from Arizona State University (ASU) and a Master of Business Administration degree from The University of Arizona (UofA), which ensures he always has a winning team in the annual ASU - UofA Territorial Cup football game. Brandt’s current professional endeavors focus on developing markets and implementing healthcare imaging solutions around the globe as Vice President of Global Distribution for Orthoscan Inc.

    Krya and Brandt love outdoor adventures and strive to inspire that same wonder and appreciation of nature in Austin, Brayden and Sydney. The Perry family, and Coco their Great Dane, seizes every opportunity to go camping, hiking, biking, rock climbing, kayaking and exploring.

    Financial Disclosures: None
    Non-Financial Disclosures: Brandt Perry serves as the Family Advisory Council Chair on the Feeding Matters Family Advisory Council; PFDA Support Pillar Lead; volunteer with Feeding Matters. Brandt is a parent of a child with PFD.

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  • Monica Davis

    Monica, a Phoenix resident, has two daughters, Genevieve (9) and Cecilia (7). She became aware of Feeding Matters after attending a luncheon in 2018 where she felt hope for her feeding struggles with Cecilia who has IgE allergies and chronic FPIES. Monica joined the Family Advisory Council in 2020.

    Financial Disclosures: None
    Non-Financial Disclosures: Has a child with pediatric feeding disorder and is a member of the Feeding Matters Family Advisory Council.

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  • Alba Chester

    Alba is originally from Puerto Rico. In 2014 she and her husband Travis settled in Arizona to raise their three boys. All three of her children have had PFD since infancy. Alba became a Power of Two Coach in 2017 and then joined the Family Advisory Council in 2019.

    Financial Disclosures: None
    Non-Financial Disclosures: Has 3 children with pediatric feeding disorder, is a member of the Feeding Matters Family Advisory Council, and a family coach for Feeding Matters.

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  • Emily Adams

    Personally, I’m the mama to a 5 yo girl with PFD and professionally, I’m a VP at USI Insurance helping mid to large companies with their Employee Benefits.

    Financial Disclosures: None
    Non-Financial Disclosures: Has a child with pediatric feeding disorder, is a member of the Feeding Matters Family Advisory Council, is a member of the Feeding Matters Board of Directors. 

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  • Amber Mieras

    I live in Peoria, AZ and am a mother of two. My son, Jax, has Down Syndrome and has struggled with eating since birth. He is now 8 years old and we have learned about the importance of celebrating the smallest successes and surrounding yourself with a strong community.

    Financial Disclosures: None
    Non-Financial Disclosures: Has a child with pediatric feeding disorder and is a member of the Feeding Matters Family Advisory Council.

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