Ben is the one.
The one who made me a mom.
The one who made me an advocate.
The one who led me to co-found the FamilieSCN2A Foundation.
If you’ve met Ben, you know he has a way of winning people over without saying a word or even making eye contact. He loves water of any kind — the pool, the sink, the bath (and yes, even the toilet if we’re not careful!). He loves Cheetos, music, hugs, and, of course, his mom, dad, and Mimi.
Ben turns 15 this October — a milestone we weren’t sure we’d ever see when he was first diagnosed with an SCN2A-related disorder. As a baby, he was so sick that doctors doubted he’d make it to his second birthday. At the time, there was no community, no research, no roadmap. We were told his disease was so rare there would never be a cure.
I couldn’t accept that.
I started searching for other families. Within months, we’d connected dozens of parents who were no longer “the only one.” That network grew into the FamilieSCN2A Foundation — a community built by parents, for families, to accelerate research, support our community, and change the future for every person living with an SCN2A-related disorder.
In his 15 years, Ben has snuck into the hearts of just about everyone he meets. One thing I believe all of our SCN2A kids have in common is their remarkable ability to draw people in — with their resilience, their strength, and, let’s be honest, being heart-meltingly beautiful.
This year, I’m marking Ben’s birthday with
my biggest Warrior Challenge goal ever: $15,000 to accelerate research, support families, and improve lives for those affected by SCN2A-related disorders.
And this year, there’s even more to celebrate. On October 1st — Ben’s birthday — the new ICD-10 code for SCN2A will officially take effect, a milestone years in the making. It will improve diagnosis, tracking, and awareness worldwide — a huge win for our community. What better way to honor “The One” than by pairing his milestone birthday with a milestone for the entire SCN2A community?
The Power of One. One person saying “yes” can inspire another. One gift can spark momentum. One milestone birthday — and one new ICD-10 code — can help change the future for children like Ben.
As the Executive Director of the FamilieSCN2A Foundation—and as Ben’s mom—I’ve dedicated my life to this mission. To show how much I believe in the impact of this community, I’m personally matching the first $5,000 raised. That means your gift can go twice as far.
How you can join Ben’s Bunch:
- Join our team for $24 – honor Ben’s 15th birthday and be part of something bigger.
- Donate directly to our Challenge – every gift counts, no matter the size.
- Join our team and create your own fundraising page – rally your friends and family to help us hit $15,000
- Already on another team? You can still show Ben some birthday love with a donation
- Part of the SCN2A community but not creating your own team this year? Join ours! All funds raised support the FamilieSCN2A Foundation and our incredible community
- Visit the store to purchase your Ben’s Bunch Warrior Challenge shirt – wear it proudly and help spread awareness. ---> https://shop.scn2a.org/collections/warrior-challenge
In-person walk details:
October 18th 10:00 AM meet at the Gettysburg Rec Park 545 Long Lane, Gettysburg, PA 17325
Join Ben’s Bunch. Donate today. Share the challenge. Let’s make this the largest Warrior Challenge yet!