The POSITIVE EXPOSURE 2024 Spirit of Change Award

Honorees: Helene and Mikk Cederroth and The Wilhelm Foundation

At center, Helene and Mikk Cedderoth, between two portraits from The Undiagnosed initiative.

Image Descriptions from left to right: 1. Close-up portrait of a child with light skin and dark eyes wearing orange glasses and smiling at the camera. 2. Portrait of a woman hugging a man, both of whom have light skin, wavy gray hair, and are wearing glasses. 3. Portrait of a boy with dark skin and light eyes wearing a yellow head-scarf and smiling at the camera.

The Spirit of Change Award was created to honor an individual or organization whose amazing work has resulted in impactful change to the human rights of individuals too often overlooked or excluded. Recipients of the Spirit of Change Award share a fierce devotion to positive change. Past honorees include international disability rights activist Judith Heumann, Special Olympics Healthy Athletes Program founder Stephen Perlman, the National Organization for Albinism and Hypopigmentation, and the Chromosome 18 Registry and Research Society.

This year, we recognize the amazing force for change by honorees Helene and Mikk Cedderoth, founders of The Wilhelm Foundation. Helene and Mikk Cedderoth lost their three youngest children, Wilhelm, age 16, Hugo, age 10, and Emma, age 6, to a degenerative undiagnosed disease. To prevent other individuals and families from experiencing the loneliness and isolation they felt while searching for a diagnosis, they founded the Wilhelm Foundation, which builds a global community and network of healthcare providers dedicated to seeking a diagnosis for individuals and families living without a diagnosis.

The Wilhelm Foundation is a strategic partner of the Chan Zuckerberg Initiative’s Rare As One Project and has hosted nine International Conferences on Rare and Undiagnosed Diseases. The Wilhelm Foundation drives the Undiagnosed Diseases Network International and pioneered the Undiagnosed Hackathon.

With 350 million people living with an undiagnosed disease worldwide, Positive Exposure teamed up with The Wilhelm Foundation in 2018 to create The Undiagnosed, an initiative that uses the power of photography to raise awareness, highlight the beauty and diversity of people living with undiagnosed diseases, and, very importantly, provide another chance and source to a diagnosis.

Click Here to Learn More about the Wilhelm Foundation.

The POSITIVE EXPOSURE 2024 Rising Leader Award

Honorees: James Barnett and Samantha DiSalvo

At center, James Barnett and Samantha DiSalvo, surrounded by two photographs of them speaking about the Textbook Beauty project at an AADMD event on Rare Disease Day in 2023.

Image Descriptions from left to right: 1. A young man and woman stand in a gallery with colorful portraits on the white walls and present to the audience. 2. Portrait of a young man with light skin, dark hair, and dark eyes sitting next to a woman with light skin, dark hair, and light eyes, both smiling. 3. A crowd of diverse guests gathers in a gallery with colorful paintings on the walls.

The Rising Leader Award celebrates a new generation of emblazoned activists driven to support and celebrate individuals and communities at risk of stigma and exclusion.

This year, we honor Samantha DiSalvo, MD, and James Barnett, MD, recent Albert Einstein College of Medicine graduates and active Chapter leaders in the American Academy of Developmental Medicine and Dentistry.

Dr. DiSalvo and Dr. Barnett symbolize a new generation of healthcare providers committed to improving the quality of healthcare for people with Intellectual & Developmental disabilities and forging the way for humanity to be brought into medical education. Together with Positive Exposure, this dynamic duo and a team of other students and Einstein faculty worked tirelessly to create Textbook Beauty, a diverse photo source which gives medical students, allied healthcare providers in training, practitioners, and faculty access to positive, informative images presenting the humanity and dignity of individuals living with various conditions/diagnoses.

“If the goal of a good medical education is to encourage patient-centered care, which emphasizes the well-being of the person, then photos that display patients more like specimens cannot be the standard,” Dr. Barnett said. “These Positive Exposure pictures changed my view of my duty as a healthcare professional and how we should perceive patients.”

Distinguished Recognition of New York City’s Disability Social Justice Warrior, Carr Massi

At center is a portrait of Carr Massi, between two images of her at protests.

Image Descriptions from left to right: 1. A woman with light skin and short, curly blonde hair wears a blue jacket and sits in a wheel chair beside a sign that says "Gov. Cuomo: Your MTA. Your Stations. Make them accessible and safe now!" 2. Portrait of a woman with light skin and short, curly blonde hair wears a pink and white shirt with an illustration of a donut and sits in a wheelchair with her hands clasped, smiling at the camera. 3. Surrounded by a crowd outside a building, a woman with light skin and short, curly blonde hair holds a microphone to her mouth and an orange sign with a picture of a wheelchair and the text "WE SHOP."

In a special tribute, Positive Exposure would like to celebrate the life of our dear friend and fierce advocate, Carr Massi.

Carr Massi is a revered figure in the New York City Disability Rights Movement, starting her career in the mid-1960s at Courage, Inc., and later becoming deeply involved with Disabled In Action (DIA), where she served as president twice over fifty years. She co-founded the Metropolitan Chapter of the National Paraplegia Foundation, helped transform it into the Center for Independence of the Disabled, New York (CIDNY), and was President of the Board of Directors of the Brooklyn Center for Independence of the Disabled (BCID).

Carr Massi, who uses a wheelchair, has sued five businesses in Manhattan for violations of the Americans With Disabilities Act. In New York City, DIA’s advocacy helped bring about innumerable tangible accomplishments, including curb cuts, accessible buses, taxis, ferries, polling places and movie theaters, physical access to state and federal courts, accessible retail entrances, accessible internal layouts at retail chains like Duane Reade, and accessible community board and other local political offices. In a half-century of activism thus far, Carr has never stopped fighting.

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Annual Fundraiser and Celebration of Humanity

TUESDAY, OCTOBER 8, 2024