History of Family Voices of North Dakota andFamily Voices National

Staff Information

FVND staff bring a rich diversity of information and assistance to the table for others.

Donene Feist is the mother of 3 children.  I began my quest in assisting families early on when our oldest and middle child were initially diagnosed about a month apart.  Also, as a member of the Family Involvement Subcommittee of the Interagency Coordinating Council (ICC).  I became involved as I was looking for answers in raising my own children with special health care needs. "We were lost, didn't know where to begin to find services or even where to begin."  Through the ICC effort, I was a founding member of North Dakota Family to Family, now called ND Parent to Parent. "I became involved with Family Voices natioanlly about the same time and later started our own chapter."  Donene is a nurse and as such knew it was vital to collaborate at all levels for our children.  However, with that said...didn't know all of the resources that were needed.  "Health and education are essential pieces of the needs of families."  It is essential to have the "Family Voice" at all tables to ensure positive outcomes for our children. Donene has been very active both at the state and national level on areas of health, medical home, transition, family centered care, cost effective and community based services, and family satisfaction. Donene is the recipient of the Robert Wood Johnson Community Health Leader Award 2008 

Vicki Peterson-I am a very proud mother of two boys, one 16 and one 6. My youngest, Aaron was diagnosed with auitsm at the early age of 15 months. Aaron went from being verbal to nonverbal. He lost all his language skills in one week. With the extraordinary help of trusted friends and family, early intervention and a very helpful resource center; Family Voices, we began our journey into the world of special health care needs and disabilities. Now at age 6, Aaron has transitioned form Early Childhood Special Education and into kindergarten this last fall. He is no longer non-verbal and is an emerging child of language and communication. Being mentored by my trusted friends, I learned about all the systems involved in the process of raising a child with special needs. I became involved in local areas of advocacy, RICC, and support groups. Feeling the need to give back to the community that helped my family so much, I became involved in Family Voices of North Dakota as a Family Consultant. I am now involved in active advocacy at the local, state and national level. I have a great passion for families to be connected to the resources they need and the educational tools they need to support their children with special health care needs. My sons have taught me a great deal and Aaron has inspired me beyond belief.

Brenda Schmid-I am the proud mother of beautiful little girl named Hannah.  Hannah is 11 years old and to date is undiagnosed.  Hannah has a history of undefined suspected neurometabolic disorder with complications of psychomotor retardation, dystonia and intractable epilepsy.  Hannah birth was normal and within 48 hours went into status epilepsy and the rest is history.  Not having a diagnosis has proven to be one of the biggest obstacles not only in Hannah’s medical management, but also in receiving services (medically necessary therapy), getting medical approval for continued diagnostic testing and not knowing what the future holds.  In the past 11 years I have been involved in tasks forces, advisory committees, attended Mentor Parent training, attended parent support groups of children with special needs.  I currently serve as President for HOPE Inc. (fitness, fun, socialization for children who use wheelchairs for their mobility).  Our family recently built a handicap accessible house for Hannah (that was a learning process).  As a family we enjoy going to the lake, swimming, pontooning, participating in HOPE Inc. activities, spending time with family and friends, going to movies, and long walks with our dog Howie.  In my free time I enjoy shopping, reading, golfing and entertaining.  Someone asked me a long time ago, “what is it that drains you”  I replied, “taking care of Hannah”, then they asked me, “what fills me up”, I said, “Hannah”.  Hannah is my life always has been.  From the second that I laid my eyes on Hannah I was in love.  It is my love for Hannah that drives me.  Over the past 11 years we have met some amazing children and their families.  It is my pleasure to dedicate my time and energy to help children and families like ours.  Hannah has completely empowered me to go after what she needs and deserves.  Through our journey we have experienced mountains, valleys and meadows and no matter where we are at in our journey we learn and grow and continue to move forward.  Yes, we landed in Holland, and we wish that Hannah was free of all pain, suffering and medical difficulties, but we wouldn’t choose any other destination, because nothing can compare once you have been to Holland. 

Joan Karpenko "In 1993 my world was turned upside down and would never be the same again.  But it has been an amazing experience and I have no regrets as it has made me a better person.   From a routine ultrasound 5 months into my pregnancy, I was told my daughter, Ali, would have Spina Bifida.  She probably would never walk and would have many physical and mental challenges.  I was scheduled to terminate the pregnancy but could not go through with it. (For 22 years I was a professional cake decorator.  We closed our family bakery in 2004.)   For many years since Ali's birth, my dream was to be involved with families who would face the same situation.  It's just a connection you feel from having a child with a disability.  It is such a good feeling to be able to support other families who are following in our footsteps, to help them find services, equipment and to connect them with other families.  When meeting these families you don't feel like strangers, but as if you have known each other for years.  My daughter Ali and I have been working on having an all accessible playground in Grand Forks.  Phase 1 was built in September and Phase 2 will be built in the Spring.  It has been an amazing project with community support.  We can't wait to see kids with disabilities enjoying it.  A 52 year old friend in a wheelchair has never been on a playground and is excited for this one to open!!! 

Staff Information

Moe Schroeder

I began supporting parents long before I found myself needing to be supported.

I connected with parents by providing In-Home Supports while caring for their children.  Since beginning my journey with all of them, my husband Rob and I have had two beautiful children, Kasey and Tyler.  

Kasey is a bubbly, shoe shopping, book loving, sports playing girl.  Her kind heart is always worn on her sleeve. 

We envy her unselfish

willingness to put others first.

Tyler is our little fireball who has had us on our tiptoes since utero.  He was prenatally diagnosed with a complex form of congenital heart disease  at 22 weeks.  Since birth he has had three open-heart surgeries.   The possibility of needing a heart transplant at some point in his life is highly likely, but for now medication is enough for him to carry on and be himself.  Tyler loves music, swimming, and reading books.  We have learned to enjoy today and worry about tomorrow when tomorrow comes.  

Since Tyler’s birth I have found myself wanting to reach out to other parents by providing support and helping them steer through the resources that our state has to offer.  I am currently working as an Experienced Parent in the Fargo Region.  I also joined the Family Advisory Board for Children Special Health Services and also provide information from a parent’s perspective for the Sanford Fargo Medical Home Team.  

 Words cannot express how excited I am to be part of the Family Voices Team!!  I am anxiously waiting to meet all of you! 

 Joscelyn Lynch-

Hello Everyone,

 My name is Joscelyn Lynch and I am happily married with two beautiful children. I am a stay at home mom and I also take online classes to finish my Bachelors in Early Childhood! We were blessed this month with the birth of my son, Nolyn. My daughter who is 3 ½ couldn’t be more proud of her baby brother. We are all adjusting to the change but we are loving every minute of it! I am excited to be a part of FV and hope to be a helping hand in any way needed. My daughter was diagnosed with epilepsy at 7 months old and I want to be able to be the comfort I wish I had then.  I am thrilled to be able to be a helping hand to others and delighted to start my journey with FVND.

Deb Unruh-

My name is Deborah Unruh, and my personal introduction into the “world of disability” was not necessarily one that I chose, but rather one that chose me.  Within a short period of time, three members of my immediate family were diagnosed with different disabilities.  My husband contracted a virus which attacked his heart, leaving him in need of a heart transplant.  Shortly thereafter, we found out that our adopted daughter had Fetal Alcohol Syndrome.  While we were still absorbing what these two diagnoses would mean in our lives, one of our sons began experiencing severe motor tics, and was later diagnosed with Tourette Syndrome and epilepsy.  These events are what led me toward my relationship with Family Voices of North Dakota.

 Before I became a Family Consultant, I participated in FVND’s Family Leadership Institute.  Through the institute, I gained a myriad of knowledge about myself, about how to best help my family, and about how to assume a leadership role to help those outside my family.  Because of this, I have chosen to seek out other meaningful ways that I can make a positive difference – both for my own family, and for other families and individuals with disabilities.  I may not have taken that next step had I not been inspired to make a difference by what I learned through the Family Leadership Institute.  Family Voices has made a profound and lasting positive difference in my family’s life, and I am excited to be a part of making a positive difference in the lives of other families!

Heather Wittliff-

I am Heather Wittliff and I am the new Family Consultant for the Minot Region  I am so excited to be part of the Family Voices Team.  A little about me I am married Eric we have been married for almost ten years and have two children. When we started talking about what I wanted to do for a living or better said as what do I want to be when I “grow up” all I could talk about was supporting families who had been on and were continuing their journey or were starting a journey in the disability community.  Much of what has compelled me to wanting to take this leap was and is being a parent of a child who is amazingly funny, a bit sarcastic (that may come from me) and very loving; this would be my oldest child Michael who is ten and has an Autism Spectrum Disorder and it took us three plus years to get to that diagnosis. More than once I wouldn’t have been able to figure out the next step if it wouldn’t have been for the people at Family Voices they helped my husband and I get to where we are.

Michael is a busy ten year old who right now thinks the world should revolve around his electronics. He loves US History and science, school isn’t his favorite place but when he is interested he is so much fun to teach things too. 

I am delighted to say we also have a princess of a little girl named Ella she is 6 and loves to play dress up , be the little care giver and read. If someone would have told me how different two children could be I am not sure I would have believed them they are like night and day. Ella is a care giver and wants to take care of everyone and everything. Michael is our thinker he is always trying to figure out things he likes the parts of things not always the whole picture.

Outside of my family and my work with Family Voices, I am a licensed childcare provider, and I teach CPR and First Aid for the American Red Cross.  I am on the board of directors for the independent living center here in the region which is Independence Inc. and I am currently the president of MAPS-4-ASDs the autism support group in the Minot region.  When I am not busy with all of that I love to read, scrapbook, and occasionally sew.   I look so forward to serving you all and can’t wait to get to know many of you.