Vienna's David Egan Makes Appeal For More Down Syndrome Research

VIENNA, VA — In the 1970s, people with Down syndrome like David Egan were kept in state institutions or did not have a long life expectancy outlook. When Egan was born, hospital staff recommended taking him to an institution. But instead, his parents took him home.

That led him to thrive and become an advocate for people with Down syndrome and other intellectual disabilities. Now 46, Egan has a long list of accomplishments, from participating in Special Olympics swimming to becoming the first person with an intellectual disability chosen as the Joseph P. Kennedy Jr. Public Policy Fellow. In the fellowship role, he worked on the Ways and Means Social Security subcommittee in Congress and with the National Down Syndrome Society. He has also testified to the Senate Committee on Health, Education, Labor and Pensions and spoke about human rights at the United Nations. He published a memoir with his mother, Kathleen Egan, called "More Alike Than Different: My Life with Down Syndrome."

But before all of those achievements, Egan played an important role from a young age: a subject of research studies.

In October, Egan discussed his experience in a keynote speech at the 50th anniversary gala of the University of Wisconsin-Madison's Waisman Center, a research institute for developmental disabilities and neurodegenerative diseases.

In 1979, Egan was one of the first children in the Waisman Center's early childhood program for children with and without intellectual disabilities.

"I am one of many people of my generation who are proof that expectations for us have changed deeply," said Egan. "What seemed impossible on the day I was born is thankfully now a possibility and a reality in part due to the work of various advocates and researchers across the country and especially here at the Waisman Center."

During an 18-month study early in his life, researchers would visit the Egan home once a month to observe and document his motor skills. Egan credits the Waisman Center's early childhood program for making a difference in developing his social and verbal skills.

The family later relocated to Vienna, Egan has been part of research studies throughout his life, from the University of Wisconsin-Madison's Waisman Center studies at a young age to National Institutes of Health studies. A few years ago, Egan volunteered with his father for stem cell research at the Waisman Center and later volunteered with his brother for research on Alzheimer's disease.

"I hope that our extra chromosome could be a clue to understanding this disease," said Egan.

Today, Egan not only participates in research studies but advocates for more research on people like him. At the gala, Egan pushed for support to continue research on people with developmental disabilities that could benefit humans on a wider scale.

"That doesn’t mean I am asking scientists to change me," said Egan. "I am comfortable with who I am. I hope the medical and research community will find that the extra chromosome unlocks discoveries about how the brain works. I hope they will find studying Down syndrome to be exciting and interesting. Maybe that research could make it easier to understand diseases that affect us all."

Growing up, Egan would ask his mother when he could "get rid of this Down Syndrome thing?"

"She would say, 'It is something that stays with you all your life, but it does not stop you from having dreams and being successful," said Egan.

His outlook has changed since childhood, as he has become a fierce advocate for people of all abilities to succeed.

"Having Down syndrome does not define me as a person," said Egan. "People with disabilities do not want pity. We want to be accepted for who we are and given an opportunity to succeed like anyone else."

Egan delivered the speech after a difficult two years with health battles like long COVID and surgery. The speech also brought together his family and let them reconnect with Waisman Center researchers and graduate students.

"The 50th Gala anniversary at the Waisman Center went very well and David received a standing ovation after his speech," said David and Kathleen Egan in an email to Patch. "The whole family was there. We reconnected with old friends from the Waisman Center and also graduate students who knew David as a baby and still live in Madison."

Learn more about Egan and his advocacy at davideganadvocacy.com.