Brian joined Flower City Down Syndrome Network (FCDSN) in 2012 shortly after his son Seamus was born. Having an only child with Down Syndrome, Brian wanted to learn how he could contribute to the Down Syndrome community and be involved with other families who had children with the same diagnosis. Joining FCDSN seemed like the way to get involved and learn about ways to support his son. Brian grew up in Webster and currently lives with his wife and son in Brighton where he also works as a real estate agent. Brian began serving as President of FCDSN in January 2015.
Marisa has served on the board since 2010, and began serving as Vice President in 2012. Marisa and her husband Dan have two children – Fletcher and Gabriella who has Mosaic Down Syndrome – and reside in West Irondequoit. Marisa grew up in Webster and Dan was raised in rural Randolph, they met in college at Cortland. Besides being a busy mom, Marisa works as a branch manager for a credit union and is the “cookie mom” for Gabby’s Girl Scout Troop. The Howards enjoy keeping busy and they frequently visit indoor waterparks and love to travel. FCDSN is a second family, Marisa enjoys giving back to the organization and the Down Syndrome community.
Debra lives in Henrietta with her husband Pat. She has two grown sons, and four beautiful grandchildren. Debra works full-time as an Administrative Assistant. She joined Flower City Down Syndrome Network in 2006 when her nephew Matthew was born, to learn more about Down syndrome. She enjoys scrap booking, spending time with her family, and going to the family camp in the summertime. She became a board member about 2 years after she joined Flower City Down Syndrome Network.
Chuck joined Flower City Down Syndrome Network (FCDSN) in January 2016 after working 44 years as a financial executive in the Rochester area. Chuck grew up in East Irondequoit and now resides in Webster with his wife Joan. They have 4 grown children and 13 grandchildren, the youngest of whom, Seamus, has Down Syndrome. Chuck also had a younger sister who had a severe case of Down Syndrome and passed away when she was only 8 years old. Looking to utilize his experience as a volunteer, FCDSN allows him to be involved with a worthwhile cause that has close personal relevance.
Anne and her husband Jason are residents of Brighton. Their son Elliot was born with Down syndrome on June 15, 2010. Anne is a licensed attorney and is the Senior Vice President of Human Resources at PathStone Corporation, a human service and community development non-profit organization. Anne is also on the Board of Directors for Starbridge, which is a nonprofit that provides education, employment, health, and community living services to individuals with disabilities. Anne’s husband Jason is an urban planner with Bergmann Associates and is a member of the Brighton Planning Board. Elliot is a kindergartener at Council Rock Primary School.
Nancy has been a member of Flower City Down Syndrome for over 15 years. She grew up in Rochester with 5 sisters, including her sister, Jacqueline, who had Down syndrome. Jacqueline inspired Nancy to become a special education teacher. Nancy has worked in Monroe County for 22 years, first, at Mary Cariola Children’s Center and, later, at Rochester Childfirst Network providing early intervention and preschool special education services to a generation of students including many of the FCDSN members. Nancy lives in Rochester with her husband and enjoys it greatly when her 3 adult children return for visits. She now works at the Special Children’s Services division of Monroe County Department of Public Health, continuing to focus on Early Intervention and Preschool Special Education services.
Joe is a strategic accounts analyst with Paychex and lives in Chili with his wife Jamie and three kids. His son Henry was born with Down Syndrome in 2013. Joe is a proud member of FCDSN and decided to join the board following the overwhelming support he and his family received from the network after Henry was born.
Cheryl is a single mother of two children – Christina (born in 2005) and Matthew (born in 2006 with Down syndrome). Cheryl works as a paralegal downtown and spends most of her “extra” time with her second family – FCDSN! She enjoys meeting amazing families with similar circumstances and participating and planning social events and fundraisers on behalf of FCDSN. She enjoys scrapbooking, photography, outdoor activities and spending time with her children, friends and large supportive family!
Kristina Henry and her husband Kevin are residents of Fairport. They have four beautiful girls, Elizabeth, Alison, Josephine, and Marilyn. Their third daughter Josie has Down Syndrome, as well as Ehlers-Danlos Syndrome. Sometimes life has different plans and lines things up for a person and chooses a path for them before they know why. Both Kristina and Kevin work in the educational field. Kristina is a K-12 assistant principal with the Wheatland-Chili School District. She is certified as a School Building Leader, Special Education Teacher, Reading Specialist, Elementary Education Teacher, and also in NH as a Special Education Administrator, School Principal, and Early Childhood Educator. She taught at the elementary, middle, and high school levels for 9 years and has been an administrator for the past 10 years for a total of 19 years in the field of education. Kristina is well versed in special education law and is a strong supporter of inclusive practices. While living in NH she served on the Northern New England Down Syndrome Congress and was also trained as a First Call responder through the Massachusetts Down Syndrome Congress. She currently coordinates the First Call Parent Mentoring Program! She also thrives on chocolate and coffee.
My name is Lori Nystrom and I was born with Down Syndrome. I am happy with my life. I have been working at Arc Deli since 2014.
I am glad to have friends and family around me especially my co-workers.
I am proud to be part of Flower City Down Syndrome Network and excited to be on the board. Thank you for making me a part of the Down Syndrome Network .
I am proud to be a part of this with you guys thank-you for selecting me to be on the board.
Cristina joined FCDSN in 2014 after a prenatal diagnosis of Down syndrome and joined the board in 2016. Cristina and her husband, Kenny have four children- Emma, Nolan, Harper and Avery who has Down syndrome and reside in Farmington, NY. Cristina is also a travel agent and her family enjoys vacationing at Disney World. Cristina enjoys connecting with new families who are navigating a diagnosis of Down syndrome for their baby and giving back to the community. Avery will be turning three this summer and is loved by family and friends alike.
Senator Joseph Robach is the New York State Senate representative for the 56th Senatorial District which encompasses the Towns of Greece, Brighton, Parma and most of the City of Rochester. Before his election to the Senate, Robach served as an Assemblyman for 11 years filling the seat vacated by the unfortunate passing of his father, Roger Robach.