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Parents and Caregivers Share Their Experience and Their Expectations From Research

David Egan

Here’s why athlete, self-advocate, and author David Egan participates in research.

“I dare to dream and hope that the next generation of individuals with intellectual and developmental disabilities can live long and prosperous. Living long is not enough; prospering and having a good life is critical.”

Dr. Brian Skotko

Director Mass General, Down Syndrome Program.

“Do not think of this as the doctor’s project or the hospital’s project. No, this is YOUR project.” Dr. Brian Skotko wants the community to feel a sense of ownership in Down syndrome research.

Alex and Kari Jones

“Research is a way to advocate for not only Alex, but for other adults like him.”

Here’s why Alex and Kari Jones think it’s so important to participate in research.

Dr. Stephanie Santoro

Dr. Stephanie Santoro is a clinical geneticist at the Massachusetts General Down Syndrome Clinic. She is also a researcher for the LIFE-DSR study.

“We are hoping to learn so much more about adults with Down syndrome.”

Michelle Sullivan

Michelle Sullivan is a mother of four, athlete and avid fundraiser. Her eldest daughter, Britney, has Down syndrome.

“We want that next group of families to not know about any of the hardships that we may have battled.”

Jo Ann Simons

“I’m proud of the work we’ve done in the last four decades, but the work ahead needs to concentrate on research.”

Jo Ann Simons of the Northeast Arc has been fighting for a more inclusive, healthy life for people with Down syndrome – including her son! – for more than 40 years. Now, she’s advocating for more participation in research.

The Cronin Family

The Cronin family are big proponents for science and Down syndrome research. Their son, John, has Down syndrome, he is a business owner and Special Olympics athlete. He is the “Chief Happiness Officer” of his company John’s Crazy Socks.

“One of the concerns as parents we have, clearly Alzheimer’s weighs in our minds.”

The Nothnagle Family

The Nothnagles have been active in the Down syndrome community since the birth of their son Jay. Jay is 47 years old and has been honored multiple times for his exceptional contributions to the Down syndrome community raising more than $200,000 for Special Olympics.

“When Jay was born, his life expectancy was 30. Now, it’s close to 60. But inside his head, the ravages of Alzheimer’s are likely already beginning.”

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What’s Your DS Moment? A moment when you overcame an obstacle as a parent of a child with Down syndrome, as an individual with Down syndrome, as a caregiver or even a scientist  who has worked hard to improve the lives of people with Down syndrome? Learn more, here.