Be Inspired

eating a lemonNa’ama’s Lemonade Stand

Squeezing $90,000 from a lemon

Six-year-old Na’ama Uzan has raised more than $90,000 toward a cure for Angelman syndrome. It all started with a lemonade stand and a desire to help her older brother, Nadav, who has AS.

When Na’ama was four years old, she tried to think of a way to help fund research for a cure. “Now, there’s somebody working every day knowing that a little girl is standing on the corner calling out for lemonade, and that is paying the researcher’s salary,” says Na’ama’s mom, Ru.

Her idea began simply enough, but it has grown into a multi-faceted effort to engage others in seeking a cure. She challenges people to open their own stand on her Facebook page: AS Lemon Stand Initiative.

“It’s easy: Just ask an adult to help you,” she says.

Help they have. The stand has turned into a Facebook and Twitter challenge. She has even invited people to suck on a lemon and send her their reaction in a video. Aside from the natural attention Na’ama gets from neighbors and friends, her use of social media has catapulted her idea into the global news realm, and people from all over the world have joined in the effort.

She eventually branched out to add a bake sale, and later, an ice hockey charity event. All along the way, she has inspired others to drink lemonade, buy sweets, skate or try their own hand at amassing money that will help end the disorder.

While raising money for a researcher’s salary may seem like an overwhelming task, Na’ama did it by squeezing lemons into a refreshing drink for 50-cents a glass and posting about it on Facebook.

Learn more by visiting Na’ama’s adorable website. Be sure to check out Na’ama’s challenge to other kids.

 


 

outside family photoBen and Lori’s Backyard Barbecue

Backyard Barbecue Brings Thousands to AS Research

It started as a simple backyard barbeque. Ben and Lori Ray thought they should thank their family and friends who supported their walk to raise money to cure Angelman Syndrome.

This year, their “Bash for FAST” has raised more than $70,000.

“You’ve just got to start somewhere,” says Lori, a hairdresser by day. She and her husband, Ben, who owns a home automation business, ventured into fundraising the year their son, Kellan, was diagnosed with the disorder.

“We tried to learn everything we could, and wanted to help find a cure for our son,” Lori explains. “We participated in a walk to raise money. We held a backyard barbecue for the people who sponsored us as a way to thank them. But then we thought, ‘Hey! We could raise more money with this barbecue.’”

After that, the Bash for FAST, as they called it, took on a life of its own. The Rays foot the bill for all of the food and drinks. They have a taco truck come in to supply the eats, order special souvenir cups that people can purchase for $5 and rent a bouncy house. They do not charge for the event itself, but people who attend are inspired to help raise money. They bid on silent auction items, buy raffle tickets, purchase a $5 souvenir cup for their drinks and simply give money at the event or online.

The Rays’ creativity and drive spurred friends and family to pitch in. A friend with a band provides entertainment. Someone knew of a port-a-potty business that would donate facilities for the event. Someone else helped add the silent auction. Another runs the raffle.

The Rays decided to funnel everything through a crowdfunding site: YouCaring. It’s where people can pay for their silent auction and raffle purchases, as well as simply donate to the cause. The crowdfunding site is active before and after the event so that people who cannot attend still have a way to participate.

In its fourth year, the Bash for FAST attracted about 175 people.

How do the Rays get all of those people?

The hardest thing is the initial asking, says Lori. Email has been the answer.

“Using an email invitation took the scariness out of it all,” says Lori. She and Ben composed an email, sent it out to all of their family, friends and business associates, and invited them to share it with others, too. The word has spread, and every year, the event grows.

Raising money, enough to make a difference in Angelman research, may seem like a daunting task. But once you get started, says Lori, it just gets easier.

“Just do something,” she says, “a bake sale, a barbecue. You just have to start, and then you realize how many generous people are eager to help.”

 


 

John and Bethany’s Multiple Methods

kitchen smiling family photo

Start with the people you know

Combine hope, digital tools, family and friends, and soon you will be able to raise money for Angelman syndrome research just like the Schlueter family.

John and Bethany Schlueter opened a CAN page and sent an email message to all of their family and friends with an update about their daughter Grace and an invitation to support FAST’s research team.

“No parent should ever hear the devastating news that all Angelman parents hear: ‘Your child will have dangerous seizures, your child will never walk, your child will never talk, your child can’t, won’t, etc.,” say the Schlueters in their message. “What newly diagnosed parents should hear is: ‘Angleman syndrome can be cured.’”

With some simple strategies, the Schlueters have incrementally increased the people contributing toward FAST’s FIRE team. In the past few months, they have raised more than $50,000.

They shared their CAN page on all of their social media pages.

Every email they sent included a tagline: “Please join in helping my daughter Grace to walk, talk and live seizure free,” along with the link to their page.

Soon after, friends and family were spreading the news and finding their own creative ways to help. Several family members used special occasions – anniversaries, birthdays and wedding days – as an opportunity to ask for a donation in lieu of gifts.

“We are always on the lookout for opportunities to donate to FAST,” says John. “We designated FAST as our favorite charity with companies that have charitable giving programs, and we are planning a go-karting event.”

Bethany’s sister hosted a fashion show and even found a hotel bar that provided an opportunity to raise money by serving cocktails to colleagues, friends and family.

“John served as a guest bartender, and we got to send FAST 10 percent of the bar revenue and 100 percent of the tips,” Bethany adds. “Raising money for FAST is fun and easy. You just have to take that first step.”