Community Message from The Board
On behalf of the Board of Directors and the entire STXBP1 Foundation community, I want to express our deepest gratitude to Russ Novy for his extraordinary leadership and commitment to the community even before the STXBP1 Foundation was established! From the earliest days of connecting families to helping build a global organization, Russ has played a defining role in shaping who we are today. His passion for this community and dedication to advancing our mission have left a lasting impact that will continue to guide us forward. While we will miss his presence on the Board, we are grateful that he will remain an active and valued member of our community.
Charlene Son Rigby
President - STXBP1 Foundation
Community Message from Russ
Onward with Hope
Russ Novy, co-founder and Board Director, Marketing & Brand 2017-2026
I am proud to share a message with my fellow STXers around the world. We’ve been traveling together on an incredibly hard journey as we search for better treatments and a cure for STXBP1-related disorders. And, I am truly lucky to know many of you personally and to have served our community for the past 13 years. On that note, I wanted to share that I will be stepping down from the STXBP1 Foundation Board this May.
Our accomplishments are impressive and our kiddos are amazing … so, why would I want to step down? After three terms on the Board, I believe it is time to pass the baton, bringing in fresh ideas and new energy to help lead the Foundation into its next chapter. With over 1,500 families in our community, I know there are brilliant marketers already with us who can make a difference by sharing their creativity and determination in support of our mission. I want to give a fellow parent their chance to serve with this marketing and communication role and drive our incredible organization forward.
I did want to reflect on how proud I am of everything we’ve accomplished over the 13 years since we started on this journey of love, support, and hope. Together we’ve built something that simply didn’t exist before:
2013
Move to Cure annual fundraiser in CA
My daughter, Katie, finally received a diagnosis of STXBP1-related disorders at the age of 10. We had been searching for answers to the cause of her condition since her first seizure at 11 months old. That was a LONG and tiring 9 year journey seeking out genetic and neurologic experts all over the US.
Katie was the first patient at Stanford Medical to be diagnosed with this rare genetic disorder. Our Genetics Counselor at Stanford connected us with Anne and her son Mitchell from CHoP. Mitchell was the only other patient in the US with this diagnosis.
We started a Facebook Group and began monthly calls with the intent of sharing information and providing support to each other and all newly diagnosed families
2014
Dr. Ingo Helbig became our medical champion
More and more parents joined our group and we held our first in-person meeting in a private room at Maggiano’s restaurant in Philadelphia
2017
With Anne, Charlene, Melissa, Jen, and Steph we started the STXBP1 Foundation and acquired our 501(c)(3) designation in the US
Our new Board focused on supporting families with relevant / timely information, creating awareness of the disorder, and raising funds for research. We knew that to succeed in making things better for our kiddos that only "Science + Love = Cure” and we made that mantra our focus.
Over my 9 years with the Foundation, it was so rewarding to see the Board grow in depth and breadth. We added important knowledge in crucial functional areas like Finance with Heather and Legal Advocacy with Cristina. We broadened our efforts to find a cure with so much science expertise that I needed to publish a Glossary on our website just to keep up with conversations. And our community grew so large that we needed to find bigger and bigger venues to host our annual conference, plus we even needed to livestream the sessions so our families around the world could participate.
2024 STXBP1 Summit+ in PA
Since our founding, we have worked fiercely to create a gold-standard presence for STXBP1-related disorders within the rare disease community.
As we fast forward to 2026 and now look back at our accomplishments, I am simply in awe of what we’ve achieved together:
20 lines of research in a diversified portfolio
$3.5M awarded in grants and research funding
1,500+ STXers identified around the world
25 countries in our STXBP1 Global Connect affiliate program
8 world-renowned experts on our Scientific Advisory Board
8 dedicated parents on our Board
7 Family Summits
6 Researcher Roundtables
6 STXBP1 STARR Natural History sites
2 Foundation employees
And, as a marketing and communications professional, I have to acknowledge the impactful work we’ve done together in that area including creating monthly newsletters and podcasts, publishing our website and collateral into multiple languages, promoting fundraisers and events including our annual Move to Cure and September Awareness months, gaining coverage in mainstream media like People magazine and CNBC, and defining our brand while extending it globally.
We’ve come a long way, but there is still so much ahead of us. The momentum is real, and the path forward is clearer than ever. In the near term, I will help with special projects and of course, the transition to our next Marketer. So I encourage each of you to find your way to get involved, as a volunteer, fundraiser, advocate, or even a future Board member. This community is what makes progress possible.
I’m not going to say farewell, I’m going to say - I’ll see you for the cure.
Big hugs and continued hope from me, Katie, and our family
- Russ
Katie with her Dad John, sister Allie, and Pop Russ
Social media posts for STXBP1 Awareness Month held every September
