About NIBN

We are so glad you are here to learn about us and our Injured Brain Community! Please click on each tab below to expand it and read about us. Hopefully you’ll be inspired to join our Community by signing up to receive our online newsletter at the bottom of our Home page, as well as make a profile on our Connect for Support board.

History of NIBN

The Nebraska Injured Brain Network (NIBN) started as a concept in the fall of 2017 when members of a brain injury support group in Kearney, Nebraska explained how they wanted to feel and be part of something bigger than themselves. They explained that although there are valuable partners like Nebraska Vocational Rehabilitation (Nebraska VR), the Brain Injury Advisory Council (BIAC), and the Brain Injury Alliance of Nebraska (BIA-NE), the Peers in Kearney wanted a “home” for their collective Voice. They described a desire to be connected to others living with an injured brain across the state—and they wanted to do this, rather than have a professional partner do this for them.

Nebraska VR responded to this voice-driven concept and included an initiative to build connectivity among people living with an injured brain when Nebraska VR wrote its grant narrative to the Federal Administration for Community Living (ACL). Having won this grant, Nebraska VR contracted with a professional technical assistance provider to empower people living with an injured brain to plan and implement an approach to achieving the statewide connectivity and ability to support each other that they desired.

The result of the planning effort was the creation of the Nebraska Injured Brain Network (NIBN), which incorporated as a Nebraska non-profit in October of 2019 and received its IRS 501c3 status in December of 2020.

As NIBN grows, it will expand via Chapters across the state. For more information about our network of Chapters please click on the Local Chapters link.

Why NIBN Exists

NIBN’s Mission is to be a lifeline for people with an injured brain, uniting and empowering us and our families.

What does our Mission mean?

  • It means first and foremost that WE are people who are living with an injured brain.
  • Second, we are building the Injured Brain Community which is made up of anyone who has suffered a brain injury, our family members and caregivers, and our service providers and other system partners.
  • Third, as an Injured Brain Community that is connected, we can support one another as we pursue the recovery journey that each of us has defined for ourselves.

NIBN hopes to lead the evolution of the Injured Brain Community such that all people living with an injured brain in Nebraska can not only receive a lifeline from others (in whatever form they need), but also become a lifeline for others.

We invite you to engage each other! Sign up for our newsletter at the bottom of our Home page, and create a profile on our Support Forum. Become an active part of the Injured Brain Community with us!

Definition of “Injured Brain”

Many visitors are here on our site because they have suffered a brain injury, the cause of which could be many things—from a car accident to a stroke, falling off a skateboard to asphyxia, suffering a concussion, and so many other causes. NIBN and this site are focused on building the Injured Brain Community which is made up of those people who have suffered a brain injury and are now living with an Injured Brain (Peers), their family members and caregivers, and providers of services.

As the picture below indicates, a brain injury occurs at a point in time, and afterwards we are living with an injured brain as we pursue a Recovery Journey. Each persons’ Recovery Journey is unique to him or her, and our hope is that you will embrace your Recovery Journey knowing that you are part of the Injured Brain Community that is here to support you along your path.

We hope you connect with other Peers to explore and discuss what your Recovery Journey looks like for you, and in doing so help other Peers figure out what the Recovery Journey looks like for them.

Even more, the phrase “Injured Brain” means so much more. It means each one of us is a person first, and the brain injury we’ve suffered does not define us! But it is something we live with. Consider the following amazing collection of statements made by more than 100 people in Nebraska who are living with an Injured Brain. They answered the question, What does it mean to live with an Injured Brain? This collection of words, phrases and statements binds us as one Injured Brain Community.

“A brain injury is an event, with a long impact. Sometimes lifelong.

You live with your injured brain.

We don’t get to forget about it, like we do when we get stitches and they heal, or a broken bone and it heals.

It is with us.

Our injured brain makes us a new us, and that new us has challenges most people don’t see and therefore don’t understand.

I’m saying that I’m still injured. I have an injured brain, and that should mean something.

The causes are as diverse as the activities of our lives. Car accident. Work accident. Farm accident. Slipped and fell on ice. Fell playing dodgeball. Fell off a ladder. Had a stroke. Had one of many types of internal bleeding on the brain events. Shaken as a baby. Clobbered on the football field too many times, or just once.

You need to understand that my brain is damaged, hurt, wounded, and the brain takes a very long time to heal, if it ever does.

I may look normal and injury-free. But I will always be off balance. Or talk slower. Or be different emotionally than I was. Or not be able to do complex thinking or writing. Or be forgetful. Or seem like I’m in a fog. Or lose my train of thought. Or lose my car in the parking lot. Or repeat myself. Or more things. Or all of these things.  Every day.

An injury to my brain was not on my mind. It just happened. Now that it is part of me, I am hoping you can help me along my journey to whatever level of recovery time will allow.  

I need your understanding. I need your friendship.  I need your mercy. I need your love and support. I was like you, once.”

Our Vision

The Board of Directors of the Nebraska Injured Brain Network articulated and documented a Vision below that will guide us as we build our Injured Brain Community together. This Vision is constantly being pursued with initiatives, and as we make progress we envision the next phase towards building our Injured Brain Community.

Remember, our Mission is to be a life line for people with an injured brain, uniting and empowering us and our families.

When we pursue our Mission and achieve the Vision outlined below, Nebraskans living with an injured brain (and their families) will have the resources and opportunities they need to recover to the extent that they are able over their lifelong Recovery Journey, and to resume their chosen lives and lifestyle thus benefiting not only themselves and their families, but all Nebraskans.

In the next 5-7 years, the Injured Brain Community in Nebraska will have evolved and be characterized by the following:

 

 Vision StatementPrimary Purpose
1Nebraskans living with an injured brain and their family members will be the unified Voice of NIBN.Strength comes in solidarity and unity.

The Voice is what is meant by the collective group of those with lived experience (Peers and Family Members), and this Voice must be leveraged.
2We will have access to the resources we need, regardless of geographic location.Where we live should not define our recovery journey.
3We will build a community of our peers.Peers and Family Members are currently isolated, and desire/need to feel connected at both the local and statewide levels.

Connectivity with each other will allow them to support each other in ways that only they can.
4We will be assisted by Peer Supporters who can help us on our recovery journey.Peer Support is needed because there are special challenges experienced by those who are living with an injured brain which oftentimes prevents them from successfully connecting to available support, resources, and services.

Peer Supporters are those who have lived the experience of having an injured brain, and who are far enough along in their recovery journey that they can assist others in their journey. They have already navigated the system and can bond with a fellow person living with an injured brain. A Peer Supporter is invaluable and needed as their specialized experience can be utilized to assist fellow brain injury survivors in successfully connecting to available support, resources, and services.
5We will be active in shaping policies and programs to improve our recovery journey.Our Voice and needs must be understood and included by those who create policies and services that affect our lives and recovery journey.
6Those who assist us with our recovery journey will understand their unique role and collaborate with each other such that there is no wrong door to the services and resources we need.Our recovery journey is a very complex endeavor that is lifelong. Every service provider and resource that we interact with needs to understand the full perspective of what we are coping with; they also need to be coordinated with each other on our behalf.
7We will decrease the stigma associated with living with an injured brain.We need stronger public support for our needs, and by reducing stigma we will by default create awareness. Such awareness will create the opportunity to seek more support.
Current NIBN Programs

Currently NIBN does not offer any direct programs or services beyond what is offered on this website. However, we are in the process of planning a Peer Support program that we hope to launch on a partial basis in the summer of 2021.

You can stay in tune with our program and service offerings by signing up to receive our newsletter—see the bottom of our Home page.

NIBN Board of Directors

Emaly Ball, President

Hello, and welcome to the Nebraska Injured Brain Network! My name is Emaly Ball, and I joined NIBN in February of 2020 and serve as the Board of Directors President for the organization. In May of 2020, I graduated from the University of Nebraska at Lincoln [UNL] with my Master’s degree in Family and Community Services after graduation from the University of Nebraska at Kearney [UNK] with my Bachelor’s degree in Family Studies with a minor in Sociology. I am also a provisionally certified as a Family Life Educator through the National Council on Family Relations and I plan to apply for full certification.

I am very active in my advocacy work for the community of people living with a disability. During my undergraduate education, I served as the president of a student-led disability advocacy organization at UNK called Collegians for Integration and Accessibility; I served an additional one year as Vice President. In September of 2019, I became an appointed member of the Nebraska State Brain Injury Advisory Council (BIAC) and currently serve as the chair for two committees: (1) Advocacy and Education Resources Committee, and (2) Brain Injury and Co-occurring Mental Health Issues Committee.

My successes and life accomplishments were not easy to achieve, though, because I live with daily chronic pain and have had an Injured Brain after surviving three moderate to severe brain injuries in my lifetime. I am truly passionate about the Injured Brain community, and it is my hope to change the perspective from having a brain injury to living with an Injured Brain. It is a life long condition, one that can bring many challenges but is also a unique part of me.

Outside of my advocacy activities, I enjoy yoga, playing video and card games, recreational archery, and fine art (my favorite mediums are watercolor, pastel, colored pencil, and acrylic). I live in a small community near Kearney, Nebraska with my beloved caregiver and partner and our fur-child, Celestia.

 

Sarvinoz "Sara" Kadyrova, Vice President

I am a person with an injured brain.  I am passionate about NIBN’s Mission and how NIBN can be a way for Peers to connect with each other and provide support to one another.  I have had many wonderful people in my life who supported me in difficult times and who are still supporting me through my Recovery Journey. If I didn’t have the support I have I would have still been isolated, and disconnected from world around me. And some survivors do not have adequate supports or the means to engage in support groups (they often lack finances or transportation, and have physical and cognitive disabilities).  Having a Peer to be there to assist in times of need would be vital.  An injured brain is often accompanied by mental health challenges as well, so having someone just to talk to who has been through the same challenges would be very beneficial and even life-saving. I am committed to be part of this project, to make a difference in lives of survivors like me.

Susie Bonde, Secretary

My name is Susie Bonde and I am a caregiver for my husband, Frank Bonde, who has an injured brain.  Having NIBN to help connect with others is an asset to not only the person with an injured brain but to the caregiver to assist with daily and long term challenges. Challenges are not only physical changes but mental health coping with all changes that have effected everyone.  Connecting with someone who can listen, understand and walk with me as the caregiver letting me know I’m not alone would be amazing, so I’m helping NIBN create that for everyone in the Injured Brain Community.

Michelle "Chell" Janicek, Treasurer

A little about me… My husband and I live an hour south of Kearney where we raised our 3 grown boys.

In my “prior life”, I had a very rewarding career, could juggle 30 things at once and thought I was on top of my game 24/7.

I loved being a mom and a caretaker. I enjoyed lake life and the great outdoors including sand between my toes, the sun on my face, a little fishing when I could, and I can’t forget my horses. I traveled any minute I could, was social, hardworking and a published photographer. I stood up for what I believed in, volunteered when I had the time, always fought for the underdog, but most importantly, I always tried to be a good mother to my boys (and to a few other kiddos along the way).

In 2015, one little mosquito would change my life forever. I was stricken with West Nile, Meningitis/Encephalitis and now as a result, I find myself day to day just trying to fend for myself in this big scary world we live in… for as today… I am a person living with an Injured Brain.

I am very happy you have found us. I can’t wait to meet you!

While you and/or your caregiver are here, may you always feel seen, safe, heard, validated, and understood.

As we embark on this ever-changing journey together know you are not alone. May you find support, friendship, answers, and above all HOPE.

 

June Collison, Board Member

My name is June Collison, and I was a coach/mentor for Nebraska Vocational Rehabilitation to assist an individual with an injured brain with skills and competencies for nursing school. I was very blessed to be able to assist her and see the day-to-day growth in working with this individual, as well as helping to ensure that discrimination didn’t occur due to her injured brain.

I’m excited for NIBN to grow and connect people as I believe that with any injury that it is great to be able to reach out to a person that is living through the same thing.  Peers can foster a relationship that offers direction on things ranging from how to manage daily activities to more problematic challenges.  Being able to reach out and get some answers and direction will assist both individuals in being more successful and directed in everyday life activities in their Recovery Journeys.

Frank Bonde, Board Member

I am Frank Bonde, and I am a person living with an injured brain due to a semi truck running over me as I was driving my tractor.  I am very excited for a chance to establish NIBN so it can offer programs for people living with an injured brain and their families.  People with an injured brain do not know what they do not know.  They are thrown into a world totally new and foreign to them surrounded by others who have not lived the same or similar experiences and do not understand.  It would be like drowning in a world that doesn’t care about you.  However having peers who have been through stages of brain injury are essential, and are the ones who can help.  They themselves have constantly dealt with and have experience uniquely qualifying them to help new people with a brain injury, which is why NIBN is so important.  We need to connect with each other.

Larry Janicek, Board Member

My name is Larry Janicek and I am a caregiver for my wife, Michelle Janicek, who has an injured brain.  My wife and I live near Alma NE where I work for the Corps of Engineers at Harlan County Lake.  I love, the outdoors, hunting, fishing, and family.  We have three grown boys and love seeing them chase their dreams.

In 2015, our lives changed when my wife was stricken with West Nile. Her fever reached 106 degrees, she was in the hospital for 10 days and she suffered from meningitis and encephalitis.   As a result, she finds herself struggling with day to day activities and just trying to survive in this complex world.   I have been assisting her on the recovery process and try to listen and understand her struggles she now has.   Challenges are not only physical, but mental, coping with everyday life.  After many years of denial, I finally acknowledge that things will never be the same and now feel blessed to be able to help her cope and improve.  I hope I can help others who are experiencing similar situations.

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Support Forum Tips

1) Return Users: Use the top-left NIBN Member Login link to log in. You’ll be redirected to the Forum page after login.

2) New User Registration: Once on the Forum page, scroll down to the Forum dashboard to create your own account or click here to REGISTER then follow the prompts. After you have submitted your registration, you will be notified of what’s next, and you’ll also receive a confirmation email.

3) If your registration is approved, a second email notification will be sent to you. A login link will be included to help get you started. Log in with the username (or email address) and password used during registration.

4) Once logged in, you will be redirected to the Forum dashboard. Click on All Topics to begin your journey. On the Topics page, you can read the most recent topics and participate in the discussion, or start your own Topic by clicking the New Topic button.

5) You can subscribe or unsubscribe to email notifications for the entire Forum, or for any individual post.

6) When you create a Topic, a title or question is required, PLUS a brief explanation in the second text field. If you don’t include both, you will be prompted before you can submit the topic.

7) To update your profile picture or password, just go to the Membership Directory and find your profile card. You can use the search bar to narrow the results. Click your Edit Profile button. Next click the CHECKMARK which will change to Settings mode, then click the GEAR and choose MY ACCOUNT. The next screen will let you change your profile photo and password. Be sure to click the bottom button to save your changes.

8) If you want to log out, return to the Forum page and click Logout in the Forum Dashboard bar.

Forum Participant Agreement

1

If you create a profile, you are agreeing to make public your identity and contact information, and other people who have created a profile will be able to see your identity and contact information.

2

You are encouraged to ask questions and make comments to assist others. Please keep in mind that this service is not a medical or therapeutic offering from NIBN. Please keep your comments positive. NIBN leaders reserve the right to edit posts made by members.

3

You agree not to advertise for yourself or anyone with the intent to buy, sell, or trade anything.

4

You understand and agree that NIBN is not responsible for the accuracy of information shared by others via this Support Forum, and that NIBN is not recommending or endorsing any information posted by Peers on this site.

5

NIBN is only the means by which members communicate and does not vouch for any information posted on this forum. This service is all about members empowering each other with information, discussion, etc. NIBN’s only role is to try to keep the focus positive—but we are confident that our members will be able to do that.

Sign up and enjoy!

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