My kids with rare diseases – finding grace
Jill
State: Arizona
Congressional District: AZ08
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Diseases
Bone / Muscle Disease, Mental Health, Neurological Disease, Rare Disease
Issues and Challenges
Jill has encountered: Access to Expert Providers, Access to Medicine, Insurance Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Addiction / Substance Abuse, Caregiving, Disability, Medical Devices, Medical Discrimination, Underserved Community
My Story
I am a mother of a 23 son with Duchenne Muscular Dystrophy & Autism. I also have a son who is 21 who has two rare disorders as well. I have a background in Educational Psychology and Behavior and have a masters degree in Human Relations. I have spent years in advocacy, speaking, writing and serving the rare disease community. I am an expert in navigating education supports for neuro-divergent students, navigating healthcare providers, Insurance and clinical trials. I also have experience in creating and developing content for higher education. I am a caregiver and a spiritual person who has spent 13 years learning how to grow in challenging times all while having ADHD myself and doing it sober.
My Motivation and Inspiration
Helping others find grace in challenging times by sharing my experience, strength and hope. Making a difference.
My son, Anthony with DMD has a movie out that won Best Film at Phoenix Film Festival and can currently be found on Amazon Prime. He is the first person in a wheelchair to ever hike The Grand Canyon, The Narrows, and Camelback mountain.
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