From Gala to Global: RG100 Momentum

The "Journeys of the Heart" gala was extraordinary. But here's what I've learned over 25 years: a beautiful evening creates a moment. What happens next creates a movement.

That's why we launched the Raregivers100.

Beyond One Night

When we gathered to celebrate our 25th anniversary, we weren't just honoring the past; we were also looking to the future. We were activating the future. The RG100 represents something fundamentally different from traditional recognition programs: it's a coalition of multipliers whose platforms amplify the voices of rare disease families into spaces where most will never have access.

Think about it. When Lady Gaga speaks openly about living with fibromyalgia to her 55 million Instagram followers, she's creating cultural permission for millions to acknowledge invisible illness. When Tony Hawk uses his podcast, "Hawk vs. Wolf," to amplify stories about rare diseases, he's reaching audiences who might never encounter medical complexity otherwise. When Dr. Emil Kakkis builds Ultragenyx and the EveryLife Foundation, he's transforming both treatment development and policy advocacy simultaneously.

These aren't just impressive resumes. They're megaphones for marginalized experiences.

The Strategic Architecture

The gala raised critical funding for our support groups, quarterly retreats, and Emotional Journey Map distribution. However, the RG100 does something funding alone cannot: it distributes advocacy capacity across sectors, geographies and influence networks.

We've recognized 100 changemakers across ten categories: activists, actors, artists, athletes, business leaders, healthcare professionals, media figures, musicians, nonprofit leaders and wellness advocates. Each brings a different audience, a different platform, a different way of making rare disease realities visible.

Effie Parks hosts "Once Upon a Gene," creating space for honest conversations about genetic conditions that help families feel less alone. Lisa Burke, a professional broadcaster and Raregivers board member, bridges media and science to center brain health in public dialogue. Emma Heming Willis brings visibility to neurodegenerative disease caregiving through her mental health advocacy. Rep. Lateefah Simon, who is congenitally blind, brings lived experience of disability to legislative leadership.

This is deliberate ecosystem building. When pharmaceutical executives ask questions about family wellness, tech leaders consider accessibility in product design, musicians create anthems of resilience and athletes inspire young people with chronic conditions to keep moving forward. That's the ripple effect of connecting influencers with lived experience.

From San Francisco to the United Nations

Last week, I stood at the United Nations General Assembly speaking on a panel about advancing access and innovation in rare neurological diseases. The invitation came through our partnership with the European Brain Council and EMD Serono, relationships built over years of demonstrating that caregiver emotional wellness isn't optional—it's essential to treatment success.

That panel happened because the gala demonstrated something: when you bring together pharmaceutical leaders, patient advocates, researchers and families in authentic partnership, extraordinary conversations become possible. The RG100 extends that model globally.

Instead of 300 people in one ballroom, we now have 100 influencers carrying rare disease awareness into boardrooms, concert halls, research labs, legislative chambers and millions of social media feeds. The gala created momentum. The RG100 sustains and amplifies it.

The Coalition Effect

Here's what makes this powerful: RG100 honorees aren't just recipients of recognition. They're coalition partners in a shared mission. When John Crowley, co-founder of Amicus Therapeutics, speaks about transforming personal tragedy into global advocacy, he's modeling what's possible. When Christina Applegate discusses living with multiple sclerosis, she's normalizing disability in Hollywood. When Nikki Lilly empowers millions through digital storytelling about living with AVM, she's creating representation for young people who rarely see themselves reflected.

Each honoree reaches audiences we couldn't access alone. Each brings credibility in different domains. Together, they create a distributed advocacy network that operates year-round, across continents, in multiple languages and cultural contexts.

The Microsoft Hackathon, which helped identify these 200 influential voices globally, the Arthur W. Page Society cohort that recommended our rebrand and strategic positioning and the community nominations that surfaced grassroots heroes, all of this infrastructure supports sustained impact beyond any single event.

What Comes Next

The gala raised funds. The RG100 raises awareness, shifts narratives and opens doors. Both are essential. One supports our direct services. The other creates the cultural and systemic conditions where those services become less necessary because support is embedded everywhere.

For the 350 million people worldwide living with rare diseases and their caregivers, this matters. When rare disease experiences are normalized across media, entertainment, sports, technology and policy, families stop feeling invisible. When influencers use their platforms to advocate, funding increases, research advances, and empathy expands.

The gala was a milestone. The RG100 is the path forward. Together, they prove that when you create a genuine connection between visibility and mission, between celebration and strategy, between one beautiful night and sustained global advocacy, transformation happens.

The journey continues. Now we're walking it alongside 100 voices who can reach billions. Learn more about the Raregivers100 here.