THE Challenge! – The Power of Community

The Fall edition of THE Challenge! focuses on the power of community.

From My Desk

The theme for this issue of THE Challenge!, The Power of Community, is intended to shine a light on all of the ways that members of the brain injury community find connection, support, and camaraderie. By coming together in community, survivors and caregivers alike can find compassion and care, empathy and understanding, and in some cases, practical solutions to help with symptoms or struggles. Read more.

Communities of Support

Living with a brain injury can be isolating. Many of the long-term symptoms that brain injury survivors experience, such as cognitive fatigue, difficulty with vision or hearing, speech problems, unpredictable headaches or migraines, or becoming overwhelmed in dynamic settings, often makes it difficult to navigate social situations or return to a beloved hobby or career. There is also an all-too-common lack of understanding about how a brain injury can change a person’s abilities, limits, and comfort levels, which can lead to frustration and make life after brain injury a lonely experience. Read more.

Asking for Help: Community in Caregiving

Our neighbor Allen, who lives directly across the street, is tall, well over six feet. He carries his height on a solid frame. I see him out jogging from time to time and working in the yard.

My husband Steven is average height, about 5’8”, and he weighs about 135 lbs. That in itself is not a problem. In fact, it is actually a good thing because due to Steven’s health issues he can no longer walk. Now and then, especially during transfers from toilet to wheelchair, Steven’s legs give out and he ends up on the cold tile floor. The confined space of our bathroom, designed before the ADA, makes these situations challenging and uncomfortable for Steven. In those moments, once I’ve ensured Steven’s safety and provided comfort for his body, thoughts of Allen come to mind. Allen is often my lifeline in these situations, ready to help at a moment’s notice. Read more.

Finding Community Through Yoga After Brain Injury

The list of benefits from social connection and building meaningful relationships is long: less anxiety and depression, improved sleep, lower risk of chronic disease, better cognitive performance, longer and more satisfying lives. And yet, after brain injury, social isolation and loneliness are among the most common and devastating experiences. This happens for a variety of reasons—environments that trigger sensory overload, cognitive fatigue from social interaction, lack of understanding among friends and family, and heightened self-criticism that something is “wrong with me.” Read more.

Finding Support When Your Concussion Symptoms Persist

Concussions can have a wide range of symptoms, including headaches, nausea, sensitivity to light or noise, dizziness, exhaustion, difficulty concentrating, and more. For some, those symptoms can last weeks, months, or even years after the initial injury. In addition to the physical toll these symptoms can take on a person, they can often lead to feelings of isolation and despair, making it important for sufferers to get the support they need as they navigate their post-concussion lives.

Allison Moir-Smith, a therapist, artist, public speaker, and concussion survivor and activist, presented “Finding Support When Your Concussion Symptoms Persist,” a free webinar offered by the Brain Injury Association of America. Read more.

A Lifelong Luminary

Marilyn Price Spivack has made advocating for brain injury survivors her life’s work. Her efforts began in 1975, when her teenage daughter, Debby, sustained a severe traumatic brain injury. As Marilyn and her family managed the difficult days following Debby’s injury, she soon realized that her daughter’s needs – and the needs of countless others in a similar situation – could only be met by a nationwide organization dedicated to providing support to people with brain injury, with an ultimate goal of helping these individuals regain their quality of life. Read more.

Advisory Council Shares Tips for Building a Community

Recently, members of the Brain Injury Association of America’s Advisory Council joined Greg Ayotte, Director of Consumer Services, for a live virtual event about building community after brain injury. During the event, Carole Starr, Cazoshay Marie, Kellie Pokrifka, and Paul Bosworth shared their experiences with building a community after brain injury, including the opportunities, challenges, and more. Read on for excerpts from the event.

Brain Injury Association of America and United States Brain Injury Alliance Agree to Reunite Under BIAA Banner

The Brain Injury Association of America (BIAA) and United States Brain Injury Alliance (USBIA) have agreed to reunite to better serve the brain injury community as one unified organization under the Brain Injury Association of America. The USBIA Board of Trustees voted unanimously on September 10, 2024 to start the process of dissolving the organization. Read more.

State Affiliate News

See what the Brain Injury Association of America’s Affiliates have been up to. Read more.

Concussion Awareness Now News

The Brain Injury Association of America is a co-chair of the Concussion Awareness Now coalition. Concussion Awareness Now includes a braintrust of partners, including organizations that determine guidelines for concussion care, advocate for patients, and work with communities that are vulnerable to concussions. Read more.

Advocacy Update

This edition’s advocacy update focuses on an update on the TBI Act reauthorization, BIAA’s Congressional Brain Injury Taskforce briefing, and more. Read more here.