Help us get to the SCN2A conference for Henry

Hi friends,

We’re fundraising to attend the 2025 SCN2A Family & Professional Conference in Denver this summer, and we’d be so grateful for your support.

Our son Henry will be three by the time of the conference. He’s sweet, snuggly, and full of personality—his hilarious facial expressions say more than words ever could. Though Henry is nonverbal, he speaks volumes with his eyes. He brings light and love into our lives every day.

In November 2023, Henry was diagnosed with SCN2A—a rare genetic disorder that can cause seizures, developmental delays, and autism. Because it’s so rare, it’s been a lonely road. We’re navigating this condition largely on our own. In April 2025, he also received a diagnosis of high support needs autism.

Henry’s daily life is filled with therapies and doctor’s visits—speech, occupational therapy, feeding teams, neurology, and hematology for his anemia. He struggles with eating, so we pay out of pocket for daily protein drinks. Sleep is also a major challenge in our home. While he’s been seizure-free since January 2024 (a huge win!), the road ahead is still long and expensive.

That’s why this conference means so much.

The FamilieSCN2A Foundation is hosting a conference from July 31 to August 2, 2025, bringing together families, scientists, doctors, and advocates. It’s a rare opportunity to connect with others who truly understand what we’re going through, learn from experts, and find hope through community and shared knowledge.

This would be our first time ever attending something like this.

We were awarded a generous $1,200 travel scholarship, but we still need to raise $3000 to cover the remaining costs—including the $800 registration fee, flights and hotel expenses. This is hard for us to ask. We don’t usually talk about how expensive it is to care for Henry, but the truth is insurance doesn’t cover everything. Asking for help is not easy—but that’s how much we want to go. We believe this experience could be life-changing.

If you feel moved to help, whether through donating or sharing this with others, we are so deeply thankful. Your support helps us show up for Henry in the best way we can.

With love,

Henry, Rob and Amanda