Author: Vanessa Mora
Role: Director of Research at VSI

Talia Waitman helped raise $11,000 for the Visual Snow Initiative to support Visual Snow research through hosting and organizing the Visual Snow Research Fundraiser. The Visual Snow Research Fundraiser took place on May 12, 2022, at Ammos Estiatorio restaurant in New York City. The concept of the event was a cocktail party featuring a DJ, a picture booth, and a live auction.

Talia stated that the primary issue with visual snow, in her opinion, is the lack of knowledge and for people to be diagnosed is a struggle. Finding the correct doctor or resources might take years for many people who experience visual snow. Furthermore, hearing “nothing is wrong with you” or “you’re making it up” from others, including medical experts, is discouraging. “I want people who have Visual Snow Syndrome to realize there are places they can go to obtain vital resources, and fit in with people that understand them or experience the same condition,” said Talia. Talia achieved this and more by launching the Visual Snow Research Fundraiser.

After discovering the VSI donations page, Talia contacted the team with her idea of supporting the organization that led and funded Visual Snow research. She thought a fundraiser would be a creative and interactive way to raise funds without asking people to make direct contributions and for participants to gain lasting memories.

Talia committed her time to raise awareness of the event by contacting various people on social media sites such as Instagram and Facebook. She also got firms such as Soul Cycle, Rumble, Weight Watchers, Barry’s Bootcamp, Omni Orlando Resort, and others to donate goods to be auctioned. She designed a website for the live auction, which spectators could visit during the event by scanning a QR code, which would link them to the Auction Website. Talia made it feasible for everyone to access the auction, which meant you didn’t have to be present to bid; you could bid online! The live auction featured items such as an NBA jacket, a Salvatore Ferragamo bag, Márton Váró sculptures, gift certificates, nights out with people, health and wellness packages, and even private photography sessions.

While attending the live auction, attendees could socialize and enjoy the open bar. The open bar featured visual snow-themed cocktails. Also, guests enjoyed a live DJ performance that encouraged everyone to dance on the dance floor and an opportunity to take photographs and preserve unforgettable memories with their friends in the photo booth.

As an end highlight of the event, Talia Waitman gave a speech to introduce Visual Snow and contextualize the importance of the event. Talia obtained a significant achievement with the event by raising money while getting people to understand more about Visual Snow. “The fact that you can get 250 people in a room and for everyone to acknowledge Visual Snow is a real thing, know what it is, and describe it to someone else is beyond what I imagined,” said Talia.

Even though Talia had never organized or hosted a fundraiser before, she described it as “a wonderful learning experience,” adding that “if she did it again, she would make it even bigger and better.” Throughout the process, Talia discovered a large Visual Snow community that wanted to educate and support others. Additionally, she wanted the community to know that “VSI is a fantastic resource because it offers you that outlet for physicians, researchers, specialists, and even others who experience visual snow.”

The VSI organizes a variety of initiatives and events throughout the year to raise funds for visual snow research. However, the VSI appreciates community members like Talia who contribute with their ideas. The VSI encourages the community to contact the VSI team if they have an idea, would like to host an event, or in any other manner get involved in making a difference with VSI. Even a small contribution may have a substantial impact.

You can find more information regarding the live auction through the Auction Website below:
https://vsrf.betterworld.org/auctions/visual-snow-research-auction

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