https://www.bbravefoundation.org/

The B Brave Foundation, P. O Box 35294, Cleveland, OH (2026)

06/05/2026

One of the most powerful things a healthcare provider or community member can do for a family navigating a rare, incurable neurological disorder is make a single phone call or fill out a single form.

Families in this situation are often so consumed by the immediate demands of their child's care that they do not have the capacity to research what support is available to them. They may not know that B Brave Foundation exists. They may not know that financial assistance, care coordination resources, and community connection are within reach. They are focused on the next appointment, the next hospitalization, the next crisis.

That is where you come in.

A referral from a trusted provider or community member carries weight. It tells a family that someone who knows their situation has identified a resource worth pursuing. It removes one barrier at a moment when barriers are already everywhere.

B Brave Foundation accepts referrals from physicians, nurses, therapists, social workers, child life specialists, school personnel, and community members. The process is simple and our team follows up with care. If you have a family in mind right now, please do not wait.

https://bbravefoundation.org/healthcare-professionals/refer-a-child

06/03/2026

Tickets are available now for the B Brave Foundation Annual Fundraiser on July 18th.

This is the event where our community comes together in one room around a shared commitment to children with rare, incurable neurological disorders and the families supporting them. It is where donors, advocates, healthcare professionals, and friends of B Brave gather to do something tangible for families who need people in their corner.

We are not asking you to save a date. We are asking you to claim your seat. These are not easy families to serve, and this is not a casual ask. It is an invitation to show up for something that matters in a way that a social media post or a passing donation cannot replicate.

Get your tickets now and start thinking about who you want to bring with you. The more people who understand this mission, the stronger our community becomes.

We will see you there.

https://bbravefoundation.org/fundraiser

06/01/2026

Nobody plans for a long hospital stay, but families of children with rare, incurable neurological disorders often find themselves in exactly that situation.

The clinical needs get addressed. The insurance calls get made. And then there are the hours that fall in between, the afternoon stretches, the evenings in a hospital room, the days when a child is too tired for much but not tired enough to sleep. Those hours are real, and they add up.

B Brave Comfort Carts were designed with those hours in mind. Stocked with books, games, and gift cards, the carts give children and their caregivers something to reach for when the walls of a hospital room start to close in. A story to get lost in. A game to play together at a bedside table. A gift card that means one meal does not have to come from a vending machine.

It is a small thing measured against the weight of what these families are carrying. But small things delivered consistently and with care are not actually small. They are a signal that someone sees the whole picture, not just the medical one.

If you are a healthcare professional who works with these families, we would welcome a conversation about bringing Comfort Carts to your unit.

https://bbravefoundation.org/healthcare-professionals/support-information/ -cart

05/29/2026

Financial crises do not announce themselves, and for families of children with rare, incurable neurological disorders, they often arrive at the worst possible time.

A piece of medical equipment that fails. A hospitalization that extends beyond what anyone planned. A travel expense for a specialist appointment that cannot be postponed. A month where the cumulative weight of medical costs simply exceeds what the family has available. These situations are not rare within our community. They are a predictable part of a life organized around a diagnosis that demands constant resources.

The B Brave Urgent Needs Fund was created to respond to exactly those moments. When a family reaches a crisis point where an immediate expense stands between their child and the stability or care they need, B Brave works to help bridge that gap as quickly as possible.

If your family is facing that kind of moment right now, please reach out to us directly. If you know a family in this situation, share this post with them. And if you are in a position to contribute to this fund, please know that your donation reaches families at their most vulnerable point, without a long wait and without unnecessary barriers.

https://bbravefoundation.org/children-and-families/family-resources/

05/27/2026

When a family receives a diagnosis of a rare, incurable neurological disorder for their child, the medical questions arrive first. But they are not the only questions.

How do we find the right specialist? What does our insurance actually cover? How do we talk to our child's school about accommodations? What financial resources exist? Who do we call when we do not know what we do not know?

These are the questions that fall outside the clinic and inside the daily reality of families navigating a rare neurological diagnosis. They are practical, urgent, and often go unanswered for far too long simply because families do not know where to turn.

The Neurology Social Services Network is a resource designed specifically for this gap. It connects families with social workers who understand the neurological disease landscape and can provide guidance on care coordination, systems navigation, financial resources, and the kind of practical support that makes the rest of the road more manageable.

B Brave Foundation wants every family caring for a child with a rare, incurable neurological disorder to know this resource exists. If you are a healthcare professional working with these families, please share it with them. If you are a family in this situation, please reach out.

https://www.childneurologyfoundation.org/neurology-social-services-network/

05/23/2026

Today is International GM1 Day, and B Brave Foundation is honoring the child whose life still shapes our work: Joey Scaparotti.

GM1 gangliosidosis is one of the rarest lysosomal storage disorders, affecting an estimated 1 in 100,000 to 200,000 live births worldwide. It is caused by changes in the GLB1 gene that lead to a deficiency of beta-galactosidase, allowing GM1 ganglioside to accumulate in the brain and nervous system. For families, those clinical words become daily realities: developmental delays, low muscle tone, vision changes, seizures, feeding challenges, and progressive neurological decline.

For Sara and Sam Scaparotti, those realities had a name: Joey. His diagnosis changed everything, but his life became more than a story of loss. Joey's tenacious spirit and the love surrounding him became the foundation for B Brave's mission to build bridges for families facing rare, incurable neurological disorders.

Today, we carry Joey's legacy forward by helping families spot the signs, seek support, and know they are not alone. May is for GM1 awareness, but this work continues every day - through family support, caregiver resources, and a village willing to show up.

05/21/2026

We are grateful for every Team B Brave runner who showed up across recent race weekends.

Tara Hopkins ran the half marathon at the University Hospitals Cleveland Marathon and raised almost $1,200 for B Brave. A few other Team B Brave runners took on the full marathon, and our friend Ryan ran the Pittsburgh Marathon a few weeks ago.

Every mile matters because it carries this mission forward. These runners helped raise awareness and support for families caring for children with rare, incurable neurological disorders.

Thank you to Tara, Ryan, our full marathon runners, and everyone who donated, cheered, shared, or encouraged them along the way.

05/15/2026

This is the weekend.

Team B Brave is ready for the Cleveland Marathon, and we are running for children with rare, incurable neurological disorders and for every family that has trusted B Brave Foundation to stand with them through something most people will never fully understand.

If you are still on the fence about registering, we want you to know that it is not too late. Registration is still open for the full marathon, half marathon, 10K, and 5K. You do not need months of preparation to cross a finish line for something that matters. You just need to show up.

If you cannot run this weekend, there are other ways to be part of it. Cheer from the course. Share this post. Donate in honor of a runner. Send a message to a B Brave family you know. Every gesture adds to something larger than a single race.

Team B Brave will be out there this weekend carrying this mission on every mile. We would be glad to have you with us.

https://raceroster.com/events/2026/105382/2026-university-hospitals-cleveland-marathon

05/14/2026

Registration is open for the Cleveland Marathon, and Team B Brave wants you on the starting line.

Here is what we know about the people who run with us: they are not all competitive runners. Some are first-timers who wanted a reason to train for something that mattered. Some are healthcare professionals who work with children with rare, incurable neurological disorders and wanted to do something beyond the clinical. Some are friends and family members of B Brave families who wanted to show up in a visible way. All of them crossed the finish line knowing their miles meant something.

That is what Team B Brave offers. A reason to run that outlasts race day.

Registration is open for the full marathon, half marathon, 10K, and 5K. Use code BRAVE20 when you sign up to join the team officially. The race is approaching, and we would rather have you with us than watching from the sidelines.

https://raceroster.com/events/2026/105382/2026-university-hospitals-cleveland-marathon

05/12/2026

Discounted tickets are still available for the B Brave Annual Fundraiser.

Right now, tickets are $100 — a $50 savings off the regular $150 price. Use the coupon code BBRAVE100 to save.

We hope you’ll join us on July 19 at Collision Bend Brewing Company for an evening of food, drinks, community, auction opportunities, and stories that show what your support makes possible for families caring for children with rare, incurable neurological disorders.

Every ticket helps B Brave continue building bridges between families and the practical support, resources, and community they need.

Reserve your ticket here: https://event.auctria.com/72ce62c3-d9d4-4e14-ad17-156a9018cc84/?event=item&target=231b7786-fac6-45a6-8efb-bb0cb225e5aa&item=231b7786-fac6-45a6-8efb-bb0cb225e5aa

The B Brave Foundation

06/05/2026

06/03/2026

06/01/2026

05/29/2026

05/27/2026

05/23/2026

05/21/2026

05/15/2026

05/14/2026

05/12/2026

Address

Website

Alerts

Contact The Organization

Shortcuts

Share

Category