Our History

In 1996,  a group of parents from the Family Involvement Subcommittee of the Interagency Coordinating Council, all family members who had a child with special health care needs began researching family support for children with special health care needs.  The ICC sent two of the committees members to Albuquerque New Mexico for the International Parent to Parent Conference to learn all that they could and report back.   Deb Clarys and Donene Feist attended this conference with much passion  to bring family support to North Dakota.  At that conference Donene attended an Expo.  She was handed a disc of services in North Dakota, and national resources, meeting folks from across the country who were doing exactly the kind of support envisioned for ND.

Information was presented to the full committee with contact to the late Betsy Santelli , Parent to Parent Director, formerly of the Beach Center on which program would most fit North Dakota.  The subcommittee approved a trip for Tammy DeSautel and Donene Feist to research and provide information.  The research further led them to Vermont, where they learned how their organization operated.  It is here the connection was made to the national Family Voices organization.  The late Polly Arango and Julie Beckett contacted Donene Feist and inquired about assisting Family Voices in North Dakota.  She then became a State Coordinator acting as a volunteer with the assistance of Twyla Bohl.  Passion, dedicated assistance from families and professionals, and a computer disc……

Unlike today, computers were not part of most households.  Assistance was solicited from the Edgeley Lions Club and the Edgeley Jaycees.  It was needed to develop a mailing list, database, outreach trainings and publications.  Donene said “Thankfully, both groups had faith in what we were trying to accomplish and granted funds for our first computer.”  “One member of the group happened to be a grandfather to preemie twin boys, who fully understood what we were trying to accomplish for families.”  That computer was the link to resources, the internet and really the rest of the country.  When the call came to assist the national office, there were 52 names for a mailing list.  52 names!  Currently there are over 5400.

All efforts were volunteer until 2001 when Family Voices of North Dakota became a 501-c-3.  With grants from national Family Voices and the Children’s Special Health Services, then at the Department of Human Services,  and private donations further established roots as a health resource for families and professionals.

Currently FVND is funded by annual grants from the US Department of Human Services’ Health Resources and Services Administration, Maternal and Child Health Bureau (Project #1 H84MC07992-01-00), the North Dakota Department of Health (Title V, Children’s Special Services), North Dakota Department of Public Instruction, and Parent to Parent Project by ND State Council on Developmental Disabilities.

Funds employ our Director, part time Parent-to-Parent Coordinator and 5 part time Family Consultants. Collectively staff  in 2012 were able to serve over 4000 families and professionals with care coordination, emotional support, resources, assistance, trainings and activities.  For an organization like ours, private donations are  a critical component in order to assist families and providers with emotional support, resources and information.