-- The Funding Project has built a national family financial advocacy model for families navigating NICU stays, childhood cancer, disability, autism, rare disease and complex medical needs. Founder and Executive Director Tammy Simmons did not set out more than two decades ago to create that model. It began with one child, an insurance reversal and a father who did not want to ask anyone for help.
The Day Insurance Changed Its Answer
Tammy still remembers walking into The Bike Rack, her family’s longtime bicycle business in St. Charles, Illinois, and finding her brother Hal at the computer. Hal’s son Jacob was one of triplets born 13 weeks early and later experienced a brain bleed that resulted in cerebral palsy.
When Jacob was about 10, the family hoped to pursue hyperbaric chamber treatments costing nearly $13,000. Insurance had initially indicated it would pay, then reversed its decision.
Tammy knew the treatment would somehow be paid for. Her parents could step in if necessary, and she told Hal, “Mom and Dad will pay for it.” His response was immediate: “No. I am NOT asking for help.”
That sentence stayed with Tammy. Hal believed caring for his child was his responsibility, and asking someone else for financial help felt deeply uncomfortable. Tammy told him she would figure it out. Within about three weeks, she had raised nearly the $13,000 needed for the treatments.
On Jacob’s 11th birthday, he was able to shape his lips to blow out the candles on his birthday cake. It was a small moment with enormous meaning for his family.
A few months later, Hal showed Tammy a photograph of a swimming pool. After watching her raise money for Jacob’s treatment, he had begun applying for help himself and secured $10,000 toward an above ground pool for Jacob. Soon, he was sending adaptive bike families to Tammy for help finding funding.
Tammy created an adaptive bike funding packet based on the same process she had used for Jacob: understand the need, organize the information, identify possible sources, explain the story, ask, follow up and keep going after the first no. That original packet still exists today. The idea behind it simply expanded.
Melissa Copp and the Confidence to Ask
In 2016, Tammy met Melissa Copp at an Abilities Expo in Houston. Melissa and her husband Jody were raising two boys with a rare genetic mitochondrial condition that affected their ability to stand or walk independently. Their sons relied on assistive equipment, and Melissa had recently faced an insurance denial for her youngest son’s medically necessary wheelchair.
Melissa purchased the Disability Funding Guide and worked with Tammy to understand the family’s needs and develop a plan. Their biggest goal was a fully accessible home, a need exceeding $100,000.
The family ultimately received support that included an accessible home through Magnolia and the Tim Tebow Foundation, a backyard makeover through Make-A-Wish, support for a Disney trip through Variety, and national attention from Chip and Joanna Gaines. After their story reached a larger audience, the family’s mortgage was paid off within 48 hours.
Tammy describes the outcome as once in a lifetime. The repeatable part was the process: understand the need, create a plan, organize the story, identify possibilities, ask and keep going.
Melissa later said the Disability Funding Guide gave her the confidence to ask for what her family needed. She eventually became Executive Director of the Raising Wheels Foundation, helping other families herself.
The Copp family’s experience also illustrates why Rare Disease and Complex Medical Needs is a dedicated area within The Funding Project’s Family Resource Library. Families navigating rare, genetic, undiagnosed or medically complex conditions may be managing specialty care, therapies, equipment, accessibility, travel and insurance gaps at the same time. The diagnosis may be rare, but the financial questions are often familiar.
The Mother Who Pointed Tammy Toward the NICU
After Melissa’s story became known, another mother told Tammy, “If I had your book when my baby was two days old in the NICU, it would have changed our lives.”
The comment made Tammy consider timing. What could change if families learned earlier that funding possibilities existed and that they did not have to discover every resource through trial and error?
Years later, the NICU became personal to Tammy again when her own grandson spent time there. His photograph now appears on The Funding Project’s NICU materials.
That experience helped shape The Funding Project’s NICU Financial Advocacy Initiative, the first hospital centered rollout of its broader national model. At its center is the NICU Financial Advocacy Care Pack, a diaper bag backpack designed to go home with families.
The Care Pack may include the NICU Funding Guide, NICU Companion Workbook, digital access, planning materials, mom and baby essentials and Spanish language materials where appropriate.
The goal is straightforward: get practical financial advocacy resources into NICUs and into parents’ hands, so families have something to return to when an insurance denial arrives, equipment is recommended or another financial question emerges.
One National Model, Many Doorways
Today, The Funding Project’s National Children’s Financial Advocacy Initiative serves as the umbrella for its national work. Its Family Resource Library brings together four core Funding Guide and Companion Workbook sets covering NICU, childhood cancer, disability and autism, along with Spanish NICU resources, digital materials, personalized guidance and a dedicated Rare Disease and Complex Medical Needs resource area.
These categories are intended as doorways rather than walls. A baby may begin life in the NICU and later need disability related equipment. A child with a rare condition may face mobility, accessibility and complex medical needs. Families can enter through the resource that reflects their child’s journey while still accessing a financial advocacy process they can understand and use.
Through The Funding Project’s partnership with Help Hope Live, families may also have access to additional nonprofit fundraising support when appropriate.
Support from hospitals, foundations, companies, patient advocacy organizations, biopharmaceutical partners, donors and community supporters can help expand NICU Care Pack distribution, bilingual access, the Family Resource Library, hospital and community outreach, and the capacity to grow the model nationally.
The goal is not simply to create resources, but to put them into families’ hands early enough to make a difference.
More than two decades after Tammy told Hal she would figure out how to pay for Jacob’s treatment, the question beneath the work remains the same: What does this family do next?
The Funding Project exists so families have a place to begin.
The Funding Project is seeking sponsors, donors, hospital partners, foundations, companies and community supporters who want to help put practical financial advocacy resources into more families’ hands.
More information is available at TheFundingProject.org, or by contacting Tammy Simmons at tammy@thefundingproject.org.
Contact Info:
Name: Tammy Simmons
Email: Send Email
Organization: The Funding Project
Website: https://TheFundingProject.org
Release ID: 89200749
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