The Bella Project

03/31/2026

Federal law exists to protect children in state custody from research abuse. But what happens when those laws are ignored — or when they create barriers so unclear that the sickest children are never offered trials at all?

In the 1950s and 60s, researchers at Willowbrook State School in New York deliberately infected intellectually disabled children in state care with hepatitis — in the name of science. The federal regulations we have today, including 21 CFR Part 50 Subpart D, were written to make sure that never happened again.

But here’s what no one is talking about: the system is now failing children from both directions. Either someone without legal authority consents to experimental research on their behalf — violating the very laws designed to protect them — or the lack of a clear consent pathway means they’re never offered a clinical trial in the first place.

Children in foster care are among the sickest pediatric populations in this country. They experience complex medical conditions at double the rate of other children. And the children who need access to clinical trials the most are the ones least likely to be protected by the laws designed to help them get there.

Swipe through to learn what the law actually says about who can and cannot consent to experimental research on a foster child.

And if you think this is hypothetical — it’s not. This is happening right now, in Ohio, to real children.

Share this. Tag your state representative. Ask how your state is enforcing federal research protections for its most vulnerable children.

Every child deserves an informed advocate.🦈🎀🌈

03/28/2026

Last evening, The Bella Project’s Founder and Board of Directors attended The Warrior in HER Foundation Midnight Garden Gala, where women in the valley were recognized for their leadership and impact. Thank you for having us and for putting on such an amazing event!

“Advocacy without change is just noise.” -TBP

02/12/2026

💛 COMMUNITY STRONG FOR ZELDA 💛

At The Bella Project, we believe families facing complex medical journeys deserve to feel supported, seen, and surrounded by community. We’re honored to stand behind a local family working to provide safety and comfort for their daughter, Zelda.

Zelda is a 5-year-old child with autism living with an inoperable brain tumor. Because of her high seizure risk, sleep challenges, and safety needs, her family is raising funds for a specialized enclosed medical bed equipped with motion monitoring and supportive features to help keep her safe through the night. Insurance has denied coverage, leaving the community to help bridge the gap.

To support this incredible effort, The Bella Project has donated TWO beautiful designer purses that will be featured in the Chinese auction at the Valentine’s Spaghetti Dinner Benefit — and we hope they help bring extra excitement and generosity to this special evening.

📍 Andover Christian Church
📅 February 14
⏰ 3:00 PM – 7:00 PM
🍝 Spaghetti Dinner • Music • Dancing • Door Prizes

If you’re local, please consider attending, sharing, or simply showing up with love for this family. Community support can change everything — and together we can help create a safer, more comfortable space for Zelda.

We are proud to stand beside families navigating complex care journeys, and today we stand with Zelda. 💜

02/04/2026

🙌🏼

Today is a day for HOPE - and for every family who refused to give up.
The Mikaela Naylon Give Kids a Chance Act and the Accelerate Kids’ Access to Care Act have officially passed the United States Senate, the United States House of Representatives, and have now been signed into law by the Executive Office of the President of the United States.
Because of YOU - the calls, emails, prayers, shares, and advocacy - kids fighting cancer will have faster access to promising treatments, fewer delays in care, and more opportunities to participate in life-saving clinical trials.
This means:
🎗️Less red tape
🎗️Quicker pathways to innovative therapies
🎗️More options for children with rare and aggressive cancers like DIPG/DMG
🎗️More time focused on healing — not fighting the system
Real change only happens when a community stands together. And this community? You showed up BIG.
From every parent sitting bedside… every child waiting on a trial… and every family searching for hope - thank you for helping give kids a real chance.
The work isn’t done, but today we celebrate progress💛

01/30/2026

💡Did you know?

💜 Nearly 15 million children in the United States live with a rare disease
💜 70% of these rare diseases start in childhood
💔 30% of these children will not live to celebrate their 5th birthday
💜 Fewer than 5% of the nearly 10,000 known pediatric rare diseases have FDA-approved treatments

For these families and children, access to a clinical trial could be life-changing.

The bigger problem that The Bella Project aims to support is this: finding those clinical trials and providing non-medical support for families to get there.

With rare, complex diagnoses, families literally go through a grieving process while their children are still alive. 😢

💥Shock (Denial). Anger. Bargaining. Depression. Acceptance.

⏳Waiting until a family is at “acceptance” of the diagnosis is too long. Conversations about clinical trials as a treatment option must happen at diagnosis. Otherwise, it becomes a lost opportunity.

📈Enrollment in clinical trials close. Prior treatment is sometimes exclusionary and disqualifies you from a clinical trial. Limited spots mean everyone in the world is fighting for those few openings. Limited knowledge on how to parse through the “open” or “recruiting” trials is debilitating. Especially for families faced with the shock of these diagnoses.

🏨Hospitals and doctors are not only incentivized to keep their patients in network, they simply do not have time to possibly know or keep up with the available clinical trials at other institutions.

This is where we step in. The more people who know about The Bella Project, the more people we can help navigate these systems. We advocate and look for the best option for them so families don’t have to LOSE opportunities or feel like they’re at a dead end when their provider says, “I’m sorry, we’ve done everything we could.”

That’s not acceptable.

We don’t work for hospitals, we don’t answer to investors, insurance providers, or child welfare systems.

🫵🏼We are here for YOU. To fight against the bureaucracies and false narrative of “no more options, sorry”.

💰And eventually, we hope to secure so much funding that no family EVER has to worry about loss of income, bills, etc. when traveling to a research site - on top of the constant worry of losing their child.

Please share our message, our mission, and our values so no one fights these battles alone. 🦈💜