September is

Craniofacial Acceptance Month

IMAGE From Rick Guidotti and POSITIVE EXPOSURE

It’s Craniofacial Acceptance Month!

This AMAZING photo shoot took place at Positive Exposure in New York City celebrating International Face Equality Week as part of the My Face is a Masterpiece campaign.  The Celebration was a collaboration with Positive Exposure, Face Equality International, an alliance of worldwide NGOs devoted to ensuring the facial difference community can live freely, without indignity or discrimination, and myFace, a non-profit organization dedicated to transforming the lives of children and adults living with craniofacial conditions. Also involved during the festivities were students from NYU’s College of Dentistry and Albert Einstein College of Medicine.

myFace: myface.org
Face Equality International: faceequalityinternational.org/

Face to Face with the FLKs and the GORKS

By Rick Rader, MD, FAAIDD, FAADM

When I was a medical student in London, I was fortunate to perform a pediatric elective at the Great Ormond Street Hospital (informally GOSH, formerly the Hospital for Sick Children). Founded in 1852, it is one of the world’s first hospitals dedicated to caring for children. It has served as the model for pediatric training, research and specialty clinics throughout the world.  Read more HERE.

Helen Journal Helen Journal

Hoops & Hope: A Vision for Empowering Youth

The mission of the Juice Hoops Foundation is as unique as those it serves: to create inclusive and uplifting programs, services, and experiences for underserved and Neurodiverse youth and their families – leveraging basketball as the platform for instilling confidence, teaching life lessons, developing skills, and fostering relationships that lead to greater opportunity for all.

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Helen Journal Helen Journal

AI in Accessibility: Complement or Competition?

As the landscape of technology evolves, so too does our approach to web accessibility. Two emerging perspectives have begun to shape the discourse within our field: one that sees artificial intelligence (AI) as a revolutionary complement to existing accessibility tools, and another that views it as a potential competitor, challenging the effectiveness of time-tested methods.

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Helen Journal Helen Journal

ANNIE’S PAGE

Frances Hampton, the first inductee for Helen Journal's Annie Sullivan’s League, has made many positive impacts on the people she supported in her career. She was thinking in person-centered ways before person-centeredness was cool.

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Helen Journal Helen Journal

Understanding the Complexities of Gelastic Epilepsy and Hypothalamic Hamartoma

Gelastic epilepsy is a rare and unique form of seizure disorder characterized by sudden, involuntary episodes of laughter or giggling. These "gelastic seizures" derive their name from the Greek word "gelastikos," meaning laughter. While the laughter may appear mirthful, it is not accompanied by any actual feelings of joy or humor. Accurate diagnosis of gelastic epilepsy can be challenging, often requiring a comprehensive clinical evaluation, video-electroencephalogram (EEG) monitoring, and advanced neuroimaging techniques.

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Helen Journal Helen Journal

FROM THE STACKS

HUD Takes Action to Support Community Living for People with Disabilities: On the heels of the 34th anniversary of the Americans with Disabilities Act and the 25th anniversary of the landmark Supreme Court decision on Olmstead v. L.C., the U.S. Department of Housing and Urban Development (HUD) is taking policy actions to support community living for people with disabilities.

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Helen Journal Helen Journal

Finding My Voice, Changing Lives

As I stood before a crowd of 100 middle school students presenting my talk, I felt a range of emotions:  Elated. Vulnerable. Nervous.  Apprehensive. I openly shared my story of growing up with a craniofacial condition and all the struggles that came along with it, especially at school.  I talked about how I sat alone on the school bus and in the cafeteria.  I revealed how I was teased and picked last for team sports in gym class.  The kids said I had “cooties.”  I shared how I wished I had upstanders in my life, people who stood up for me.

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Helen Journal Helen Journal

Why Having Accessible Mental Health Resources is Critical in Today’s World 

There’s no sugarcoating it, these are crazy, volatile times. That’s because now, more than any other time in humanity’s history, and for a multitude of reasons, people everywhere are struggling. And if you haven’t noticed, just look around and it’ll become abundantly clear that there’s a world of people out there who just aren’t ok. So it feels like the world’s collective mental health has hit an all-time low, and that’s probably because it has.

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Helen Journal Helen Journal

Global Outreach in Speech-Language Pathology and Audiology

In January 2024, a team of dedicated clinical faculty and seven graduate students from Long Island embarked on a transformative journey to Kingston, Jamaica, with a mission to extend their expertise in speech-language pathology and audiology to underserved communities.

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Alyse Knudsen Alyse Knudsen

Face to Face with the FLKs and the GORKS

When I was a medical student in London, I was fortunate to perform a pediatric elective at the Great Ormond Street Hospital (informally GOSH, formerly the Hospital for Sick Children). Founded in 1852, it is one of the world’s first hospitals dedicated to caring for children. It has served as the model for pediatric training, research and specialty clinics throughout the world.

Read More
Alyse Knudsen Alyse Knudsen

On the Perils of Someone Treating You Who “Woulda-Coulda-Shoulda” Known More About You

I can’t help but think, from a clinical perspective, that the “little Did” is an appropriate reference to those clinicians who have had the skills, experience and confidence to treat patients with complex disabilities. The ones who sat across the table from them and knew where they lived, who they lived, with and what they were going to do when they left the clinic.

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Alyse Knudsen Alyse Knudsen

Unlocking Behaviors: Repeated Medical Complaints

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how behavioral issues can be addressed in an interdisciplinary fashion.

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Alyse Knudsen Alyse Knudsen

Recognizing Narcissism and Its Effect on People With ID

In the worst form, a narcissist may manipulate the patient with ID into agreeing with a treatment recommendation, or strip the patient of their autonomy. There is potential for emotional and psychological abuse if the patient with ID does not have others who can advocate on their behalf.

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Alyse Knudsen Alyse Knudsen

The IEC (Institute for Exceptional Care) 2023-24 Impact Report

IEC (Institute for Exceptional Care) is a nonprofit committed to making healthcare better for people with intellectual and/or developmental disabilities (IDD) so they can live life to the fullest. IEC is a unique organization in bringing a combination of nationally recognized healthcare policy, insurance, and care delivery experience and lived experience of supporting loved ones with IDD.

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