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Angel Spotlight: Marianne Barbera

Marianne holds her sister Susan's hand and embraces in a hug.
Marianne Barbera and her sister, Susan

Marianne Barbera and her sister, Susan, had an unbreakable bond. Susan, who was born with Down syndrome, received a network of support throughout her life, but nothing came close to her ultimate support system, her family, who were with her every step of the way.

From a young age, Marianne accompanied her sister Susan and her parents on trips to local events held by organizations supporting people with I/DD on Long Island. Seeing the involvement her parents had in the community and the enrichment it brought to Susan’s life, Marianne grew to follow in her parents’ footsteps when they no longer could, becoming the best advocate, supporter and cheerleader for her best friend – her sister, Susan. As Susan grew older, she settled into the AHRC Nassau North Valley Stream residence with staff that Marianne described to be “like a second family”.

Nearly 6 years ago, Susan was diagnosed with dementia, devastating her family and those closest to her. “It was like being run over by a truck”, Marianne shared, feeling unprepared to handle her sister’s care with a lack of available information and resources on the relationship between Down syndrome and dementia.

Susan’s health declined steadily after her diagnosis until her passing this August. A heartbreaking loss for Marianne and her entire family, Marianne was motivated to act, and help others who may be in similar situations.

“My only goal is to make this information available”, Marianne shared. Marianne, a newly retired teacher, has made it her mission to provide reputable resources to carefully educate in collaboration with established local organizations, and offer the support that wasn’t readily available for her and her sister in their time of need.

Angels like Marianne represent the very best of the giving season, giving their time and effort to provide guidance to those who need it most. Like Marianne, there are many ways to give this holiday season. Every act of generosity counts.

Marianne currently sits on the Board of Directors of the Charles Evans Center (affiliated with ACLD) and the National Task Group on Intellectual Disabilities and Dementia Practices. She is also on the Advisory Committee for Partners Health Plan and is an active member of the AHRC Nassau Siblings Group.

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