When Ellen and Ferre hosted their first-ever Kick AS fundraiser, they were not professional event planners or seasoned campaigners. They were parents standing in the middle of a life they never expected, trying to do something concrete for their daughter, Hazel, and for everyone living with Angelman syndrome.
Ellen is not only Hazel’s mom, she also serves as a Global Advisor at the FAST. She sees up close how urgently research is needed and how much every effort matters. That perspective is what finally turned an idea into action, and Ferre was right there beside her, helping bring it to life.
By the end of the night, their “let’s just try this” event had become one of the most fulfilling experiences of their lives and a powerful reminder that a single idea, powered by love and a good playlist, can move an entire community.
From diagnosis to “We need to do something”
When Hazel was diagnosed with Angelman syndrome, Ellen remembers being overwhelmed with grief for the life she thought her daughter would have. The future felt uncertain and full of questions.
“I remember feeling consumed by the need to understand how we could best support her, both right then and in the years to come,” she shared."
Like many families, Ellen and Ferre started looking for more than answers. They wanted action. Ellen found inspiration in other parents who were already organizing fundraisers and contributing to research. The idea of doing something similar stayed with her for a long time, even as doubts crept in.
She worried that whatever they raised would be “just a drop in the bucket” compared to what it takes to fund scientific breakthroughs. It took time to flip that thinking.
The turning point came with a simple realization: if every parent assumed their contribution was too small, nothing would happen at all. Many small amounts, together, can become real progress. Supporting FAST felt like a way to turn fear into action and to help move research toward better treatments and, one day, a cure.
A party, a story, and a room full of support
Once Ellen and Ferre decided to move forward, they chose something that felt natural to them.
“Since this was our first fundraiser, we decided to do something we know how to do best: throw a party,” Ellen said."
They created an old school themed night with hits from the eighties, nineties, and 2000s, complete with music videos playing in the background, MTV style. The goal was simple: give people a great night out and, at the same time, give them a clear way to support Angelman syndrome research through FAST.
There was a lot of vulnerability behind the scenes.
“It was definitely uncomfortable in the beginning, asking for sponsorships and openly sharing Hazel’s story and the reality of our lives,” Ellen said. “I never want people to pity us, so speaking about the harder parts felt vulnerable.”
What helped her keep going was the bigger picture. By telling Hazel’s story honestly, more people would understand what Angelman syndrome is, why research matters, and how FAST is working to change the future. When people could connect the fun of the night to that deeper purpose, they would understand the “why” behind Kick AS.
The night of the party, that hope became very real.
“What surprised me most was the sheer amount of love and support in the room,” Ellen said. “Feeling that so many people genuinely cared about Hazel and wanted to help us was incredibly moving.”
People danced, laughed, sang along to the old songs, and at the same time listened closely, asked questions, and gave generously. Behind the final total were family members, close friends, and even complete strangers who had heard Hazel’s story and wanted to stand beside her.
“To me, it represents the love and support of our family, friends, and even complete strangers who wanted to help give Hazel a better future,” she said. “That generosity is the most heartwarming part of all.”
For Ellen and Ferre, supporting FAST is a way to feel less helpless in the face of something they cannot control. Contributing to research gives them a sense of purpose, like they are actively helping shape a better future for Hazel and for others living with Angelman syndrome. At FAST, we are deeply grateful to them, and to every person who showed up, donated, sponsored, or shared the event. Kick AS is a powerful reminder that when families and communities step forward, they push the science forward too.
Kick AS Party 2.0 is already set for October 17, 2026.
Ready to start your own “Kick AS” moment?
Kick AS began as a scared, determined family trying to do one thing that felt within their power. It turned into a packed dance floor, real funding for research, and a powerful reminder that no family is truly alone in this journey.
For families considering a fundraiser for the first time, Ellen has simple advice.
“Do not overthink it, just go for it,” she said. “Choose something simple, fun, and meaningful to you. If it is an event you would personally enjoy attending and supporting, others will too. Keeping it enjoyable makes it easier for everyone involved.”
Your fundraiser does not need to be huge or complicated to matter. It does not need corporate sponsors or a formal committee. It can start with something you love to do, paired with the people who already care about your child and your family.
If you have been thinking about doing something, this is your sign to begin. Host a party, plan a walk, organize a game night, or create something entirely your own. Every effort, every story, every dollar or euro counts.
FAST can help you think through ideas, share resources, and connect your fundraiser to research that is changing what is possible for people living with Angelman syndrome.
Your version of Kick AS does not have to look like Ellen and Ferre’s. It only has to look like you, your family, and your “why.”