LI woman honored for helping families affected by rare diseases 

When social worker Nicole Drey meets children and their families to talk about navigating lives impacted by rare diseases, disorders and other special needs, she brings special insight to her counseling — the result of her own background.

A counselor at the New Horizon Counseling Center in Valley Stream, Drey, 41, has an 11-year-old son who has rare medical conditions and she was raised in a family affected by rare conditions, giving her firsthand experience, said the Malverne resident.

That insight into the challenges facing the families she counsels led to Drey, a licensed master social worker, being named recipient of the 2022 "What's Great in Our State" Family/Caregiver Award, announced this week by Gov. Kathy Hochul. The award recognizes "family members or caregivers who have made a difference in their community through their professional or volunteer work, using their own lived experience," according to the New York State Office of Mental Health. The announcement coincides with Children's Mental Health Awareness Week.

"I felt really emotional and honored and happy that my work and the things that I do are contributing to helping individuals and families," said Drey, selected from a field of 53 nominees. "I was really taken aback. It was very unexpected."

“Nicole Drey shows us ‘What’s Great in Our State’ through her drive to continuously improve the mental health system, standard of care and individual experience,” said Dr. Ann Sullivan, commissioner of the New York State Office of Mental Health, in a statement announcing the award. “Nicole is using her personal experience to provide support to families and children who may not know how to navigate the system. We thank her for this commitment to children’s mental health.” 

A Long Island native, Drey was born in Mineola but grew up in Winter Park, Florida. After graduating high school, she first worked in flight operations for an airline in Florida, and later at Kennedy Airport, before going back to school and studying prelaw at St. John's University, she said.

But it was the birth of her son, Brayden, that led Drey to social work and counseling.

Now a sixth-grader, Brayden is affected by mast cell activation syndrome, which leads to allergic reactions to any number of environmental triggers and can cause anaphylaxis, as well as Ehlers-Danlos Syndrome, a rare condition affecting the connective tissues, ligaments, joints and organs. Families and children may need help navigating the hurdles presented by some 7,000 rare diseases and conditions, Drey said.

"That's why I did social work," said Drey, who got her master's at Adelphi University and now is a Ph.D. candidate at Sacred Heart University in Connecticut. "I thought I would become an advocate, but then thought I could better help the population through social work. … and that I have an understanding at a deeper level helps me help those families navigating through the system."

Challenges for families, Drey said, include dealing with schools and school officials, social organizations, the medical and mental health system, as well as the basics of day-to-day life. Growing up in a family impacted by these issues, Drey said she saw the fallout firsthand. She and her husband, Christopher, also have had to learn to navigate sometimes difficult situations, which led to them hiring an attorney to ensure their son received all the accommodations he was legally entitled to. Her specializations include dealing with anger management, anxiety, attention deficit/hyperactivity disorder, bipolar disorder, child abuse, compassion fatigue, depression and self-harming.

"You have to have a good support system," Drey said of families dealing with rare diseases and conditions, "and if you let the amount of tension and stresses affect you it can be overwhelming. … But if you can come together, work together through it, build a solid foundation, you're more apt to deal with the situations as they come up. I feel like, because of my own situation, I'm able to help families understand how to do that. … It just gives you better insight to advocate."

By John Valenti

john.valenti@newsday.com

John Valenti, a reporter at Newsday since 1981, has been honored nationally by the Associated Press and Society of the Silurians for investigative, enterprise and breaking news reporting, as well as column writing, and is the author of “Swee'pea,” a book about former New York playground basketball star Lloyd Daniels. Valenti is featured in the Emmy Award-winning ESPN 30-for-30 film “Big Shot.”