September is
Spinal Cord Injury
Awareness Month
Cover photo: Rick Guidotti and POSITIVE EXPOSURE
HELEN JOURNAL September 2025
MEET ALESSIA!
Alessia is a spunky and sassy little girl who loves to dance, sing, and bask in the spotlight. With a strong will and a keen eye for fashion, she brings joy and sparkle wherever she goes. Her bubbly energy is truly contagious, lighting up every room she enters.
—
Medical Students Write About People Living with Spinal Cord Injury
Aging with Disability Event: NYC, 09/14/2025
‘Aging with Disability’ Event - Positive Exposure Galley - NYC - Sunday. September 14, 2025. 2:00-5:00 pm
Beyond the Injury: Stories of Resilience and Advocacy After Spinal Cord Injury
Ashley-Shae Benton MD, Sarah Parks MD, Corrie Harris MD / Photos: Positive Exposure: “Spinal cord injuries (SCI) alter life in an instant, changing not only the bodies of those who experience them but also their communities. Within these stories of life-changing injury lie powerful narratives of resilience and advocacy. In Kentucky, two very different journeys—one of a young mother who found her voice after injury, and one of a child whose family uprooted their lives for her care—demonstrate how courage and community transform life beyond injury.”
PAOH President’s Message: Eradicating Infant Oral Mutilation
Steven Perlman, DDS, MScD, DHL (hon): “Where is the Army from the World Health Organization (WHO), The United Nations Children’s Fund (UNICEF), public health leaders, and the countless number of public health physicians and dentists who are not behind the effort to eradicate the practice of ‘infant oral mutilation’ (IOM)?”
Rock Solid Reminders
Rick Rader, MD, FAAIDD, FAADM, Editor-in-chief, Helen Journal: “The editorial offices of HELEN were energized with excitement to learn that the State of Alabama was dedicating a statue to our hero, Helen Keller. This coming October, statues of both civil rights activist Rosa Parks and Helen Keller are scheduled to be dedicated on the grounds of the Alabama State Capitol.”
SAME/FAME: Highlighting Voices of Lived Experience in Healthcare Education
Ellen Bannister: “SAME/FAME (Self-Advocates as Medical Educators / Family Advocates as Medical Educators) brings together people with intellectual and developmental disabilities (I/DD), their family caregivers, and health professions educators to co-design and co-teach health care training that is centered on lived experience.”
The Ethical Algorithm: Navigating AI and its Applications in the Lives of People with IDD – Part 5
David A. Ervin, BSc, MA, FAAIDD and Douglas Golub, BA, MS, SHRM-CP, DrPH(C): “This is the final installment of a five-part series on artificial intelligence (AI) and its emerging role in home and community-based services and healthcare for people with intellectual and/or developmental disabilities (IDD). This final article explores how AI can be implemented in ways that are ethical, inclusive, and practical, drawing on lessons from our previous installments, the current state of technology, and real-world use cases to show how targeted, well-designed applications can maximize benefits while minimizing risks.”
Repeating the Mistakes of the Past is No Way to Reshape Modern Disability Policy
Neil Romano and Sara Weir Rogers: “For far too long, our government has failed to believe in the economic potential of people with disabilities. The lack of belief in Americans with disabilities is more than symbolic — it’s structural. It’s visible in the tangled web of contradictory programs, outdated regulations, and policies that punish ambition and trap millions of disabled Americans in a cycle of poverty and dependence.”
POSTER PRESENTATIONS
Poster Presentations are a great way for students, researchers and faculty to showcase their hard work on a project. HELEN Journal believes there is an abundance of posters that could lead to organizations, institutions and providers adopting promising, evolving and novel programs based on learning about them at conferences. We urge HELEN Journal readers to visit our Poster Presentations periodically and to contact the presenters for further information.
This Edition: “Administration Options for Once-Daily Valbenazine”; “Advanced Care Planning for Individuals with ID”; “An Evaluation of Lack of Return to PCARE at PDM”; “Boosting Student Knowledge of Disability Resources”; “Caring for Children with Medical Complexity”
FROM THE STACKS
EDITOR’S NOTE: There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk!
This edition: “House Passes Charlotte Woodward Organ Transplant Discrimination Prevention Act”