Support Groups Sites and Books

Are there resources you would like to see listed here ?  We are stronger together and together we shall overcome.

(email us if there are any broken links or you have something to add to this page)

 contact HOPE TBI at email: hopetbi4ever@gmail.com

Support groupSUPPORT GROUPS and SITES

( Links – listed in alphabetical order )

Active Heroes (to continue a mission to end veteran suicide)

Since the inception of Active Heroes, the programs have adapted to identify the triggering points associated with veteran suicide. Active Heroes has national programs in every state and regional programs serving with locations.

  • Active Challenges – Free events, seminars and Team Leader trainings for every state.
  • Peer mentors, business partners and resources in every state
  • A Military Family Retreat Center located in Shepherdsville, KY
  • A Military Family Community Center in Louisville, KY

Administration for Community Living (CIL) – ACL’s independent living programs work to support community living and independence for people with disabilities across the nation based on the belief that all people can live with dignity, make their own choices, and participate fully in society. These programs provide tools, resources, and supports for integrating people with disabilities fully into their communities to promote equal opportunities, self-determination, and respect.

Brain Injury Association of America (information, advocacy, support groups by State for Brain Injury) National brain injury advocacy organization.

Brain Injury Resource Center – “Our intention is help you avoid much of the grief and loss of  brain injury, and perhaps to inspire you to get involved.  To achieve these goals we offer you the benefit of our considerable knowledge and Experience.  

Most importantly, we learned that pro-active involvement, knowledge, self-awareness, and self-advocacy are key to quality of life following brain injury. 

Centers for Independent Living (CIL) – Directory of Independent Living Centers

Brainline – BrainLine is a national multimedia project offering authoritative information and support to anyone whose life has been affected by brain injury or PTSD: people with brain injuries, their family and friends, and the professionals who work with them. BrainLine also provides military-specific information and resources on traumatic brain injury and post-traumatic stress disorder (PTSD) to veterans, service members, and their families. Through BrainLine, we seek to provide a sense of community, a place where people who care about brain injury can go 24 hours a day for information, support, and ideas.

CPAN – (Coalition Protecting Auto No-Fault)

Crisis Text Line – Our first priority is helping people move from a hot moment to a cool calm, guiding you to create a plan to stay safe and healthy. YOU = our priority.

  • You text 741741 when in crisis, available 24/7 in the United States.
  • In Canada text 686868.
  • In the UK you text 85258
  • A live, trained Crisis Counselor receives the text and responds quickly.
  • The Crisis Counselor helps you move from a hot moment to a cool calm to stay safe and healthy using effective active listening and suggested referrals – all through text message, using Crisis Text Line’s secure platform.

Defense and Veterans Brain Injury Center – The Defense and Veterans Brain Injury Center (DVBIC) is a part of the U.S. Military Health System.  Specifically, DVBIC is the traumatic brain injury (TBI) center of excellence for the Defense Health Agency

As the traumatic brain injury (TBI) Pathway of Care manager within the Military Health System (MHS), the Defense and Veterans Brain Injury Center promotes state-of-the-science care from point-of-injury to reintegration for service members, veterans, and their families to prevent and mitigate consequences of mild to severe TBI.

Domestic Violence Hotline – We envision a world where all relationships are positive, healthy, and free from violence. We answer the call to support and shift power back to people affected by relationship abuse. 1-800-799-SAFE.

Facebook:

You have to be a member of Facebook (this is free) in order to join these groups.  Be selective here.  Find a group or several groups to join.  Don’t be afraid to leave a group after you join if it doesn’t meet your needs.  Be cautious about giving out personal information (address, phone number, etc) out to people online.  Some groups are public (anyone can see posts), some are closed (cannot see posts unless you are a member), and some groups are private (by invitation only).

In the search bar use searches for public and closed groups:  “TBI”, “traumatic brain injury”, “concussion”, “polytrauma” “head injury”, “acquired brain injury”, “trauma support” “encephalopathy”  “stroke” “shunt” “craniotomy” or any combination of words you are looking to have support for.

Family Caregiver Alliance – The mission of Family Caregiver Alliance (FCA) is to improve the quality of life for family caregivers and the people who receive their care. . Our services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Ongoing support is available with FCA, also now on a digital service platform.

FCA is a longtime advocate for caregivers in the areas of policy, health and social system development, research, and public awareness, on the state, national and international levels.

The services, education programs, and resources from FCA are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving.

HOPE TBI Co-Op/Exchange (donate items needed to others, acquire needed items  – no selling or vendors allowed here)

National Suicide Prevention Hotline –  The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals. 1-800-273-8255

Mary Free Bed Rehabilitation Hospital – Restoring hope and freedom through rehabilitation. Their vision is to be a national leader in high-value rehabilitation and post-acute care and to develop an integrated system of care throughout the Midwest.

Mental Health America  (list of support groups for various needs)

Michigan Auto Trauma Network and Support Group  (This is an online networking and support group for those interested in helping people involved in the No-Fault system here in Michigan.)

Motor Vehicle Accident – Support and Recovery Group, Facebook – (In Canada by Dawne McKay)

National Rehabilitation Information Center – The National Rehabilitation Information Center (NARIC) is the library of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). We collect, catalog, and disseminate the articles, reports, curricula, guides, and other publications and products of the research projects funded by NIDILRR.

United States Brain Injury Alliance – The mission of the United States Brain Injury Alliance is to engage the community in preventing brain injury and improving lives. Nonprofit coalition committed to improving lives through awareness, prevention, advocacy, support, research, and community engagement.

Virtual CIL – Directory of Independent Living Centers Nationally

Wounded Warrior Project – Veterans and service members who incurred a physical or mental injury, illness, or wound while serving in the military on or after September 11, 2001. You are our focus. You are our mission.

Listings on this page, below this, are from people or organizations I have personally spoken to and have their permission to post here.

 

To add yours, contact HOPE TBI at email: hopetbi4ever@gmail.com

SURVIVOR BLOGS/WEBSITES/VIDEOS

16 Petals of Blue Light (a couple’s journey from surviving to thriving with TBI; a story of love, tragedy, and rebirth)

Brain Attack – (a true story of stroke survival told through music; Blog to raise awareness and support for younger stroke survivors)

Carole J. Starr (brain injury survivor, keynote speaker, and author)

HOPE TBI (informational website site created and maintained by a Survivor of polytrauma and TBI)

Life Story  (Survivor video made by Adrian Torbenson to tell his medical life story and help motivate others to never give up their dreams)

Murray Dunlap (Survivor website talks about his life after trauma; Published Author)

Replay Polo (Survivor teaches people with disabilities to ride horses)

The Story Begins (Survivor talks about his injuries and successful recovery)

Tears of Truth (chronic pain patient who lives with severe systemic-full body RSD/CRPS, Chiari One Malformation with symptoms brought on by an MVA)

strongertogether

BOOKS by Survivors/Caregivers 

Almost – Andy Nicholson

Behind The Glass – Adrian Torbenson

Falling Ashes – Adrian Torbenson

It’s All In Your Head – Blaine Stanziana

My Miracle – Rodney L. Barnes

No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury –  Joel Goldstein

TBI – Traumatic Brain Injury – The Caregiver’s Perspective –  Bobby Porter

Truth Be Told – Justine Johnston (JJ) Hemmestad

 

MUSIC by Survivors/Caregivers

Hope Survives – Cristabelle Braden

Into The Free – Lori Conti

Invisible – by Scottish Head Injury Music Support Group

Just Can’t Move On – Adrian Torbenson

Post Concussionist – A song about Traumatic Brain Injury – Vera Quijano

We’re Gonna Make ItBrain Injury Awareness Music Video – Cristabelle Braden