myFace, myStory: Advocating For Your Child: A Parent’s Perspective

Live Broadcast: July 20, 2022 at 6pm ET / 3pm PT

myFace’s Dina Zuckerberg sat down with guests, Lenica Bruce, Amy Schefer, and Max Singer, as they share their experiences of what has and has not worked in advocating for and supporting their children with facial differences, through medical procedures and surgeries, and what they have done to help their children overcome teasing or bullying in school.

Read about our guests below the video:

Picture of Lenica. A fair-skinned woman of color with straight black hair, large glasses with black frames, and wearing a black sgirt decorated with polka dots and flowers. She is smiling and is wearing large circular, dangling hoop earriings Lenica graduated from SUNY Orange with an AS in Biology. She has been employed for 19 years as a Certified Surgical Technologist at Garnet Health Medical Center in Middletown NY. Lenica has 3 children and her youngest daughter, Anibel, was born with Nager Syndrome which affects eating, hearing, and speech. It also affects the arms and hands. Anibel has had to depend on a feeding tube and trach for most of her life. Lenica has had to become a fierce advocate for her within the school district, medical care, and insurance companies. Lenica has spoken at MyFace-sponsored events about how she has had to navigate insurance companies and school boards. She has appeared in court to fight for Anibel’s right to nursing care in school. She won an appeal against the department of health in 2019 that stated that Anibel was allowed to have outside, qualified nursing for while she was in school.

A picture of Amy Schefer with a grayish-orange gradient background. Amy is smiling and has long, dark wavy hair. She is Caucasian and is wearing a dark, collared v-neck shirt. Amy is a patient advocate, school district teacher and administrator, and parent of a daughter with Goldenhar Syndrome (or ‘craniofacial microsomia’). Her medical and family advocacy work stem from over 20 years in education advocating for language minority families and students, and 17 years advocating for her daughter, friends, and acquaintances with rare medical conditions. Amy is a part of the National Organization of Rare Disorder’s Rare Action Network, joined Seattle Children’s Hospital researchers and the head of Ear Community to advocate for National research funding from the National Institute of Health on Capitol Hill, has participated in various fundraising and publicity events for Seattle Children’ Hospital, the South Sound YMCA and FACES-the National Craniofacial Association, and appeared on Discover Channel‘s TLC series “Two in a Million – A Face Like Mine”- a documentary series featuring two people who have the same rare medical condition who get to meet someone like themselves for the first time.

Picture of Max Singer against a plaiine grya background. Max is a Caucasian male and has a facial difference, he has short dark hair and he is smiling. He is wearing a gark suit jacket with a light blue collared shirt and a red tie with small, white polka dots on it Max Singer was born with a bilateral cleft lip and palate and is the father of a child who was born with a cleft lip and palate as well. After graduating from Syracuse University Max served as an Infantry Officer in the US Army, followed by attending Cornell University where he received an MBA. Max currently works as a Vice President in Evercore’s investment banking practice.koE

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