For several years, one of DSF’s programs has been our Family Network Ambassador (FNA) Program. This program is made up of veteran Dravet parents who come together to support our foundational mission:
To aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.
Today, we are thrilled to welcome 13 Family Network Ambassadors for the 2026–2027 cohort.
From across the country, this group includes both mothers and fathers of children ranging in age from 2 to 32. They are teachers and professors, occupational therapists, fundraising superstars, and TikTok influencers you’ve probably seen in your feed.
Please join us in welcoming:
Aleksi Ilmonen (New Jersey), Allen Golec (Florida), Amanda Parchim (Illinois), Amy Lopez (Maryland), Brandee Murray (North Carolina), Brenda Ferrell (Tennessee), Brenda Tisdale (Illinois), Brianne Trechter (Washington), Christina Osenbach (North Carolina), Dominique Tavares (California), Jen Marasco-Kuhn (Pennsylvania), Laura Fahy (New Jersey), and Michele R. Williams (California).
This cohort is a blend of returning Family Network Ambassadors and parents who are new to the role. Over the course of a two-year term, each ambassador will help propel the three core pillars of our mission: raising awareness, fundraising, and supporting other families.
Raising Awareness
Each FNA has a social media presence where they share curated content directly from DSF, along with their own original stories and experiences. They talk openly about life with Dravet syndrome, helping to educate, connect, and inspire.
You may already recognize Christina’s stories at @bseizurefree, Laura’s at @overwitchlaura, or Dominique’s @bluntly.dom on TikTok. When speaking about her social media presence, Laura shared:
“My goal is to make complex concepts accessible and to support families who may feel overwhelmed or alone.”
Fundraising
Being an FNA also means taking an active role in fundraising—and this rockstar team delivers. Collectively, they have raised tens of thousands of dollars to help move critical research forward.
This past year, Brandee hosted “A Night of Dreams for Dravet.” Even after an unexpected snowstorm forced a last-minute cancellation, she wasn’t deterred and successfully rescheduled the event just a few months later.
Allen, Brenda T., and Brianne have each hosted Steps Toward a Cure walk events in their local communities. Allen’s running partner is his daughter that he pushes in a specialized chair. Hosting a walk allows him to share what he loves with his community while raising funds for DSF at the same time.
Supporting Families
The third—and final—pillar of the DSF mission is the heart of the Family Network Ambassador program.
Michele and Brenda F. both have adult sons with Dravet syndrome and bring invaluable insight into the realities of adulthood, long-term care, and evolving support needs. Michele explains her motivation for serving as an FNA this way:
“Adults with Dravet syndrome are growing in numbers, and our knowledge about them is behind.”
Amanda and Amy are in the thick of the teenage years and are especially skilled at connection, listening, and deep interpersonal support.
As one of two dads in the group, Aleksi brings his own unique perspective to raising a child with Dravet syndrome. Jen’s professional background as a social worker makes her particularly adept at identifying resources and navigating systems of care.
While each ambassador brings different strengths and experiences, they all share one thing in common: an overwhelming desire to support other families. Brianne shared:
“DSF has been my lifeline from the beginning of our journey, and I am committed to being part of that lifeline for other families.”
For Dominique, it’s about giving back:
“I want to be someone other caregivers can lean on. I want to give back to the community I’ve so heavily needed and leaned on, too.”
On the welcome page of our website, there is a quote that beautifully captures the heart of this program:
We know that the fight against Dravet syndrome will never be successful without teamwork. None of us can do this alone, and to achieve great things, we must work together.
Simply put, we are stronger together. We can accomplish incredible things—but only if we walk this journey side by side. These 13 dedicated individuals are ready to listen, share, and stand with you as we move forward together.
To read their complete bios, please visit our FNA website.
If you would like to be directly connected with a Family Network Ambassador, please email Austin Watson at austin@dravetfoundation.org. She will gladly facilitate an email introduction between you and one of our incredible FNAs.
