“We’re just regular kids.” – a Video Interview with Self-Advocate, Ava Percy
Ava Percy is one of our youngest Self-Advocates at age 13. While chatting over Zoom, she told me she prepared her answers and was happy to share them with the […]
Building Without Permission: A Disabled Entrepreneur’s Blueprint for Doing It Anyway
Starting a business when you live with a disability doesn’t come with a user manual. What you get, more often than not, is a tangled web of red tape, raised […]
“Finding Your Tribe”
Bea Powell, mom to Daniel, 18q- and our fabulous South Central Coordinator exudes joy, kindness, compassion, and love for her family and the Registry during her video interview. She shares […]
Chromosome 18 Parent Story: Christina Pasculli
This time of year is bittersweet for my family; March 10, 2023, we received my son’s official Diagnosis of Tetrasomy 18p and Isochromosome 18p and my world changed forever. […]
Practical Ways Parents of Special Needs Children Can Navigate Work-Life Balance
Balancing a career while raising a child with special needs presents unique challenges that require thoughtful strategies and resources. Parents often find themselves juggling multiple roles, striving to meet professional […]
Design for Independence: Transforming Your Home’s Accessibility
Design for Independence: Transforming Your Home’s Accessibility Navigating the process of making your home accessible can seem daunting. As your needs or the needs of your family members change, […]
Beyond Companionship: The Critical Role of Service Dogs in Promoting Independence
Service dogs are more than companions; they are lifelines for individuals with disabilities, offering them a unique form of support that fosters greater autonomy and self-sufficiency. These trained canines […]
Strategies for Making Job Openings More Accessible to People with Disabilities
Ensuring job opportunities for people with disabilities transcends mere legal compliance, aiming instead to nurture a diverse and inclusive workplace. By actively making these opportunities accessible, you contribute to transforming […]
Celebrating Rare Disease Day – Niki’s 18 Short Stories
By Niki Junker, a Chromosome 18 parent: Day 1: February 29 is Rare Diseases and Disorders Day. For the next 18 days, I will be sharing parts of Lili’s story […]
First Time Camp Experience
The 2023 conference in Columbus, OH, was my first and most certainly not my last. Our family decided I would go on my own this year and see how things […]