Penny’s Flight Foundation raises $1.2M at FamJam to fund vital NF research

Introduction

When Penny Doerge was a few months old, she rolled off her parents’ bed and broke her leg. The injury led to a diagnosis of congenital pseudarthrosis, which is associated with neurofibromatosis (NF). One of the most common genetic disorders, NF affects almost 130,000 Americans. No two cases are the same as tumors can form along nerve pathways anywhere in the body at any time. And yet there is no cure.

Penny’s Flight Foundation was founded in 2022 shortly after Penny passed away at age 16 from complications of NF. Her parents Kate and Chad Doerge chose to turn pain into purpose, celebrating the way their daughter bravely lived her life and supporting much-needed advances in NF research. Penny’s Flight focuses on funding innovative studies, collaborations, and therapies that will lead to the eradication of this debilitating condition.

When it came time to start raising awareness and funds, their community stepped up. Penny’s friends hosted pop-up events at their schools, accepting donations with QR codes and giving away balloons, stickers, bracelets adorned with their signature butterfly motif. Soon, larger events like Pucks for Penny hockey games, Play for Penny lacrosse games, Paint for Penny, and more took shape.

As word spread, their donor base did too, beyond those who personally knew Penny. New supporters noticed the impact that Penny’s Flight was making and shared a passion for driving research and change. To steward this generosity, the team started looking for a trusted way to collect donations online.

Keeping track of data amid growth

As Penny’s Flight Foundation became more established, Kate wanted fundraising software that would centralize everything. “We needed a platform that could formally track all of our contacts and donations,” she explained. “It also needed to offer full customization. We’re not cookie cutter, and it was very important to us to have our unique brand thread through everything, from our website to social media to events.”

As they set increasingly ambitious fundraising goals – striving for $1.5M in 2025 – it was important to have a system in place that made the giving experience as seamless as possible.

A reputable, straightforward solution

Kate and her colleagues asked other organizations for recommendations and did their research on the best, more reputable platforms that were manageable and straightforward to use. Donorbox fit the bill, and they signed up for a Pro account in December 2022. Its customizability was also a key selling point, letting them design the form to match their brand.

Making the most out of every fundraising event

With Donorbox, Kate and her team have greater visibility into their finances. “Being able to use Donorbox as a database to look at last year’s gifts, this year’s gifts, and where we currently stand has made a big difference,” Kate explained.

Penny’s Flight is an expert at hosting and empowering supporters to run fundraising events. There are now over 115 different Penny’s Flight chapters at schools and colleges nationwide, and they plan pop-up events one after the other. “With Donorbox, we’re able to keep track of where dollars are coming from and who has donated at each event. This helps us nurture our contacts from donation to communication to continued support,” Kate shared.

Their biggest annual event – Family Jamboree, or FamJam – takes place on Penny’s birthday at the end of June. In 2025, they soared to new heights, drawing an incredible crowd of 800 guests, welcoming musical guests like Dawes and Talib Kweli, and raising over $1.2 million for NF research. The event even inspired a $100k donor match this year. They’ve used Donorbox Events to sell tickets and collect money for sponsorships and donations annually.

In addition to events, Kate uses Donorbox for general online donations. The average gift size on Donorbox is a whopping $512, and they’ve collected well over 1,000 donations. The majority of donors generously choose to cover fees when making a gift, which Kate attributes to individuals understanding how critical these funds are, and how every penny counts. Many have also become monthly or annual donors, helping provide reliable support.

Communication plays a big role in their success. The team is always reaching out to donors through social media, email, and even text messages. "Donorbox's text-to-give shortcode has been great. During events, we've been able to communicate with supporters quickly and track who's giving in real time," Kate shared. They've brought in $12k through this channel alone. The team makes a point to regularly communicate, connect with, and engage donors so they feel close to the cause.

The Future

It’s more important than ever for private foundations to raise awareness and funds to fuel vital NF research. In March 2025, $25 million in federal funding was cut from NF studies led by the CDMRP. “This loss in funding is devastating, but it underscores the role that charities like Penny’s Flight and many others play in filling the gap,” Kate explained. “We’ve brought in new donors this year who understand how crucial these funds are.”

The power of partnerships remains as strong as ever. Collaborating on limited edition merchandise and hosting in-store events with brand partners like Roller Rabbit, Lily Pulitzer, and Veronica Beard has helped support the foundation and bring greater visibility to the cause. Their incredible work has been featured on the Today Show, CBS, Oprah Daily, Hello! Magazine, and more.

Looking ahead, the foundation aims to continue increasing awareness and funds to support research and initiatives, helping improve the lives of those living with NF. As part of that, planning is already underway for the 4th annual FamJam. Donorbox is proud to play a small part in the Doerge family's success as they honor Penny's beautiful memory and help find the cure to neurofibromatosis.

Donorbox features used

• Campaigns
• Events
• Text-to-Give
• Mailchimp
• HubSpot