The B Brave Foundation

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The B Brave Foundation

B Brave Foundation is a 501(c)(3) nonprofit organization that improves the lives of children with inc

08/30/2026

August 30 is National Grief Awareness Day, a moment to recognize something many people underestimate: grief doesn't move in a straight line, and it doesn't end when the immediate crisis passes.

For families who have lost a child to a rare, incurable neurological disorder, the hardest stretch is often not the first few days but the months that follow, when the world has moved on and the practical weight of loss is still very present. Counseling. Sibling support. Memorial costs. Time away from work that wasn't planned for.

Our Joey Bear Grant, named for Joey Scaparotti, provides practical support for exactly that stretch. It won't undo the loss, but it can ease some of what comes after. Learn more at https://bbravefoundation.org/children-and-families/family-resources/.

08/25/2026

Most people learn about rare disease through statistics, if they learn about it at all. Project Rare takes a different approach: documentary storytelling that follows real families through diagnosis, care, and the daily reality of raising a child with a rare, incurable neurological disorder.

The point isn't just awareness for its own sake. Families like Ava's in Alaska or the Flysjo family navigating a gene therapy trial show healthcare providers, policymakers, and donors what fragmented care actually looks like from inside a household. That kind of understanding is how systems start to change, not through a policy paper, but through seeing a family's reality clearly.

Watch the series and see for yourself at https://www.youtube.com/watch?v=_w43KU1MMm0&list=PLRBdwtsXHvnCrrQQErir1DGGxrDBj8Yrz.

08/20/2026

Behind almost every family managing a child's rare, incurable neurological disorder is a small group of healthcare professionals who became more than clinicians, the nurse who remembers a child's favorite blanket, the child life specialist who knows exactly when to step in during a hard procedure.

Our Caregiver Appreciation Program exists to recognize those professionals directly, and to strengthen the relationship between families and the care teams they depend on most. When healthcare workers feel seen for the extra compassion they bring, families benefit from that continuity of care too.

Sustaining this program costs $1,000 a year. If you'd like to nominate a healthcare professional or support the program, visit https://bbravefoundation.org/children-and-families/family-resources/

08/18/2026

Healthcare providers are often the first people to recognize when a family needs support beyond what a treatment plan alone can offer. A diagnostic odyssey, an overwhelmed caregiver, a household quietly falling behind on bills, these are things a nurse or social worker notices long before a family asks for help out loud.

That's exactly the moment our referral process is built for. If you work with a family affected by a rare, incurable neurological disorder, you can refer them directly to B Brave, and we'll follow up to understand what kind of support fits their situation, whether that's a Family Support Grant, the Self-Care Fund, or simply connecting them with our resources.

Referrals take just a few minutes. Start one at https://bbravefoundation.org/healthcare-professionals/refer-a-child.

08/13/2026

When a child has a rare, incurable neurological disorder, back-to-school season doesn't just affect that child. Brothers and sisters navigate their own version of it too, often with less parent attention than they need, more responsibility at home, and worry they don't always say out loud.

Siblings in these families frequently become helpers earlier than most kids their age. They learn how to sit quietly during appointments, how to notice when a parent is stretched thin, and how to carry concerns they don't fully understand. That's a lot for any child heading back to a classroom.

Part of what we do at B Brave is help families think through the whole household, not just the child with the diagnosis. If your family could use support navigating this season, our resources are a starting point: https://bbravefoundation.org/children-and-families/family-resources/

08/07/2026

Long hospital stays wear families down in ways that are easy to overlook. It's not just the medical stress, it's the small daily grind of fluorescent lights, hospital cafeteria food, and days that blur together on an inpatient floor.

Comfort Carts are our way of interrupting that grind, even briefly. Stocked with books, games, toys, and small comfort items, the carts move through partner children's hospitals and give families and staff something outside of medical routine to hold onto. A stuffed animal for a child who hasn't been home in weeks. A card game for parents trying to make an ordinary evening out of an extraordinary situation.

Keeping a cart stocked all year costs $2,000. If you'd like to help fund one, visit https://bbravefoundation.org/donate.

08/06/2026

Insurance rarely covers everything a family needs when a child has a rare, incurable neurological disorder. A wheelchair ramp. A month of mortgage payments while a parent takes unpaid leave. A hotel room near the hospital during a long inpatient stay.

Our Family Support Grants exist to fill exactly those gaps. Rather than a fixed list of approved expenses, we ask each family what they actually need and build the grant around that answer. One family might use it for medical equipment, another for home accessibility changes, another for lodging during a hospitalization.

That flexibility matters because rare disease doesn't come with a standard playbook. If your family needs support, or you're a provider who wants to refer one, start at https://bbravefoundation.org/grant-application-form/.

07/30/2026

Caring for a child with a rare, incurable neurological disorder is not a nine-to-five job. It's every hour of every day, and it rarely leaves room for the caregiver's own health.

The Self-Care Fund exists because we've watched parents put their own needs last for so long that they run out of the strength caregiving requires. Depending on what a family needs, the fund can cover counseling, trauma-informed therapy like EMDR, bereavement support, or a gym membership that helps a parent stay physically able to lift, transfer, and keep up with their child's care.

No two families ask for the same thing, and that's the point. If you or someone you know could use this kind of support, start the conversation at https://bbravefoundation.org/children-and-families/family-resources/.

07/27/2026

Today’s the day! The 10th Annual Cleveland Musicians Fundraiser is happening at the Yankies Complex in Geneva-on-the-Lake, and we’d love to see our B Brave community there.

Head out for live music, raffles, auctions, food trucks, and the kind of Northeast Ohio community that knows how to show up for families. Music starts at noon, admission is free, and the event is open to all ages, rain or shine.

B Brave is honored to be the fundraiser’s 2026 charity partner. Every person who attends helps bring more attention and support to children with rare, incurable neurological disorders and the families who love and care for them.

Bring a friend, enjoy the music, and help make this 10th anniversary one to remember.

Yankies Complex
5482 Lake Road East, Geneva-on-the-Lake

Details and free ticket registration: https://www.clevelandmusiciansfundraiser.org/

07/24/2026

This past weekend's B Brave Foundation Fundraiser brought our community together in support of children with rare, incurable neurological disorders, and the energy in the room doesn't have to end with the event.

Our Complete the Puzzle campaign is how we keep that momentum moving into the kind of steady, dependable support families need every month, not just once a year. Becoming a monthly donor means choosing a level that works for you: $10, $20, or $50 a month, given automatically so families always have support to count on.

If you were with us this weekend, thank you. If you couldn't make it, this is your chance to stay connected to the mission in an ongoing way.

Complete the Puzzle and become a monthly donor: https://donorbox.org/complete-the-puzzle-2026-fundraiser

Address

P. O Box 35294
Cleveland, OH
44135

Website

https://www.bbravefoundation.org/

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