For those of you who know Laura and Peg, you will not be surprised that a phone call to talk about the BOCES program turned into an hours-long conversation about having a child with Down syndrome and how deplorable it was that there was no support group for families of children with Down syndrome in the Rochester area.

Laura and Peg decided to remedy the situation by starting a group. A few weeks later, Laura made contact with Gloria Forgione at the Mary Cariola Children’s Center, who had a mailing list of a group of parents with older children with Down syndrome who had met on a semi-regular basis to provide support for each other. A notice was sent out to this group advertising an organizational meeting to be held in September of 1991. In the meantime, Laura and Peg went to visit the Batavia Down Syndrome Support Group, which was led by Kay Cook. Kay gave us invaluable information about getting a group started and the kinds of services that might be provided. When September rolled around, approximately 15 people attended - many of these folks became the core group that got FCDSN up and running.

An organizational group was formed to choose a name, establish by-laws and to create a structure for the group. This group included Tom Clark, Laura Khederian, Kevin Linke-Judge, Judy Morley, Peg Schoenfelder and Jim Schwarz. Monthly meetings were held including guest speakers discussing various topics relating to Down syndrome. Gloria Forgione at MCCC was kind enough to finance all of our mailings at this early stage as FCDSN had no money to pay for mailings! Without her financial and organizational support, the FCDSN would not exist today. In May of 1992, FCDSN held it’s first fundraiser - a garage sale! We raised approximately $800 and felt like we were swimming in money!

Our first major project as a group was development of a packet of information to be distributed to area hospitals. Most of the early members of FCDSN were astounded by the lack of information available to them at the time of their child’s birth. Laura and Peg worked with Rita Claire Streb, a social worker at Strong Memorial Hospital, to build on a packet of information that Rita Claire was providing to new parents at Strong. Laura had met Rita Claire at Strong while Jimmy was being treated in the neonatal intensive care unit following his birth. Together Laura, Peg and Rita Claire pulled together general information on Down syndrome, available early intervention programs, and contact numbers for support into a packet that was distributed to all hospitals in the area. When Laura had Jimmy’s little sister at Rochester General Hospital, the nurses were a bit perplexed when she asked them, “If Hannah had been born with Down syndrome, what would you do?” She was greatly heartened when the nurse brought her an FCDSN information packet. Provision of information packets for area hospitals continues today as an important service of FCDSN.

Another initial project of FCDSN was the establishment of a group library that included books and other materials relating to Down syndrome. A visit to the library in 1991 would net many horribly pessimistic and out-of-date materials on Down syndrome and many parents from this era have horror stories about picking up a book that they hoped would be helpful and instead resulted in nightmares about their child’s future. FCDSN, spearheaded by Peg Schoenfelder, worked to get the out-of-date materials removed from the library and to compile a collection of current and helpful publications for use by FCDSN members. This collection was maintained by FCDSN, and in 2008 the entire collection was donated to the Rochester Public Library so that it is now available to the entire community. Another library related project of FCDSN occurred in 2000 when the group donated age-appropriate books involving characters with Down syndrome to area elementary schools.

Over the next several years, FCDSN continued to grow and provide support to the Rochester community. We organized monthly informational meetings, creating relationships with professionals throughout the community. Many physicians, educators, and service professionals spoke to our group during those early days. These meetings were generally well attended with 15-20 parents participating on a monthly basis. Social events included a summer picnic and a Holiday party in December. Many of the friendships forged at these early meetings continue today.

Another key contributor to the early FCDSN was Dr. Nancy Lanphear, a developmental pediatrician from Strong Memorial Hospital. Dr. Lanphear had a strong interest in helping people with Down syndrome, and approached the FCDSN about doing a survey about what kinds of medical supports were needed by families in the Rochester area and whether the area would support a Down syndrome clinic to provide specialized care for our children. In collaboration with the FCDSN, this survey was mailed out to area parents and provided invaluable information both to Dr. Lanphear and FCDSN. Over the next several years, Dr. Lanphear proved to be a huge support to many families in our group. She moved to Genesee Hospital and started a Down syndrome clinic. The purpose of the clinic was to support area pediatricians by having a specialist examine children with Down syndrome and provide information to their parents and primary care physicians about how they could best support the child medically, educationally, and socially. Dr. Lanphear was particularly helpful to parents of kids with additional challenges above and beyond their Down syndrome diagnosis. She wrote a column for the FCDSN newsletter entitled “Ask Dr. Nancy” where she answered questions submitted by parents. Sadly for the FCDSN, Dr. Lanphear moved to Cincinnati in the late 90s. The Down Syndrome Clinic was moved to the Kirsch Center for Developmental Disabilities at Strong Memorial Hospital, where it continues to be run today by Dr. Stephen Sulkes. Dr. Sulkes followed in Dr. Lanphear’s footsteps, providing much support and information to FCDSN during the last decade.

Many milestones have been reached since the early days of FCDSN:

• Creation of a Board of Directors in 1996

• Establishment of financial support programs for families:

  • Reimbursement for conference attendance

  • Reimbursement program for recreational/social pursuits

  • Scholarship/Tuition reimbursement program for family members and individuals with DS 

• Annual Fundraising Events – Gala Auction and Buddy Walk

• Member Appreciation Events – Summer Sea Breeze Picnic and Annual Holiday Party

• Collaboration with Strong Genetics to create an information packet for individuals who find out through amnio or CVS that they are carrying a child with DS (this occurred in the late 90s and early 2000s)

• Creation of social groups for different age groups

• Creation of Speaker's Bureau

• Hiring of first paid part-time staff person (2009-2011)

• Hosting 3-day conference on sexuality and people with DD for parents, service providers, and individuals with DD - Dave Hingsburger, a nationally known expert in this field

• Hosting of several 1-day conferences on special topics

A growing volunteer pool helps to support the continuing growth of FCDSN. FCDSN currently has one major fundraiser each year – the Annual Buddy Walk. Over the years, FCDSN staff has strived to support, inform and educate parents, family members and community members by offering a wide variety of programs and services to meet each group’s distinct needs. Tremendous strides have been made in education, social acceptance and healthcare for people with Down syndrome. These successes invigorate FCDSN as we look toward a bright future. 

Families and volunteers continue to provide the energy, enthusiasm and commitment, which are key to the ongoing success and growth of FCDSN.