Family Voices of North Dakota - Assisting families of children with special health care needs and the providers who care for them

Family Voices of North Dakota Health Information and Education Center

Family Voices of North Dakota
PO Box 163
312 2nd Ave. w
Edgeley, ND 58433
ph: 701-493-2634
fax: 701-493-2635
alt: 1-888-522-9654
fvnd@drtel.net

Assisting families of children with special health care needs and the providers who care for them

The FVND Health Information and Education Center:

Assist families as they navigate public and private systems, including health systems and insurance plans

Provide assistance to families in accessing services and resources for their children and how to partner with providers and caregivers

Listen to families as they describe their encounters with systems and help guide them to possible solutions

To work with families, health care providers, public and private agencies, and advocacy or support groups to promote family-centered care and medical homes for children with special health care needs

To promote discussion and linkages among families, providers, managed care programs, and government to better serve the health care and related needs of children and families in North Dakota

Family Voices of ND Health Information and Education Center is funded by a grant from the US Department of Human Services’ Health Resources and Services Administration, Maternal and Child Health Bureau (Project #1 H84MC07992-01-00) and the North Dakota Department of Health (Title V, Children’s Special Services) and Parent to Parent Project by ND State Council on Developmental Disabilities

What We Do

Welcome Parents, Family members, Advocates, and Professionals to the Family Voices of North Dakota Health Information and Education Center for families who have children with special health care needs: disability, chronic illness, physical or mental health conditions. We're here to help you locate resources, assist in navigating complex systems, promote linkages and discussions....What can we assist you with today??

Family Voices of North Dakota Mission:

Family Voices, a national grassroots network of families and friends, advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs; promotes the inclusion of all families as decision makers at all levels of health care; and supports essential partnerships between families and professionals

Family Voices of North Dakota was started in 1996 and became a State Chapter formally sanctioned by the national organization in the first quarter of 2001

We mourn the loss of Polly Arango former Executive Director of the national Family Voices who died Saturday, June 26th 2010

Polly was a great mentor and friend to FVND...we will forever miss her smile, eyes that lit the room, tenacity and passion on behalf of children with special health care needs. May we continue to carry on your vision Polly, and make you proud.

Polly Arango obituary

Hear a piece of music which was given to Polly at her retirement party, from Hawaii

FVND staff Missi Baranko and Vicki Peterson receive Glenda Schepp Exceptional Dedication Award at Pathfinder Family Center Conference May/2010.

Missi Baranko receives award from Ms. Cathy Haarstad

Vicki Peterson receives award from Ms. Cathy Haarstad

Donene Feist and FV Board Pres. Ruth Walden in recognition of Donen'es RWJ award

Donene Feist and Family Voices Board President Ruth Walden presenting her a bouquet of flowers in recognition of the Robert Wood Johnson Community Health Leaders Award Family Voices Gala February 23 2009

What's New?

Family Voices of ND at the White House

On Tuesday, June 22, Donene Feist, Executive Director of Family Voices of North Dakota, attended a presidential press conference at the White House! Ms. Feist was accompanying fellow North Dakotan Jennifer Restemayer, whose daughter, Allison, has Mucopolysaccharidosis type 1 (MPS 1), a genetic disorder that requires very expensive medication. The Restemayers are in danger of soon reaching their insurance policy's lifetime limit, so they should be helped by the health care reform law, which bans lifetime limits for plans beginning on or after September 23 of this year.

For more on the event:

White House blog -

Video of the event -

Photos of the event -

Video of Jen's daughter-

For more on the law, read the Administration’s Fact Sheet-

Today's Washington Post (page A3) has a story about the meeting with health insurance companies that took place just prior to the press event. At the meeting, the President warned the insurers not to use the health care reform law as an excuse to raise premiums excessively. See

Donene Feist wins Robert Wood Johnson Community Health Leaders Award 2008

See video produced

See also press release