Community Rallies Together to Fund a Young Girl’s Trip to Angelman Syndrome Summit

It feels good to rally together for a good cause, doesn’t it?

That must be the case for this Cedar Valley, Iowa community who answered the call when the mother of a young girl with Angelman syndrome called out for help to send her and her daughter to the FAST Global Summit and Gala in Chicago where other families affected by Angelman syndrome come together.

And we’re so thrilled it worked!

What is Angelman Syndrome?

Angelman syndrome is a rare neuro-genetic disorder that is often misdiagnosed as cerebral palsy or autism. Angelman syndrome primarily affects the nervous system and causes developmental disabilities, neurological problems, and seizures. Though the disease cannot be cured, patients with Angelman syndrome tend to live a normal lifespan.

Developmental delays, such as lack of crawling or babbling, early on are usually the first signs of Angelman syndrome. Later on in early childhood, seizures often begin. In addition, patients with Angelman syndrome often smile and laugh frequently, and have very happy, excitable personalities.

To learn about Angelman Syndrome, click here.

A Trip of a Lifetime

The FAST Global Summit and Gala is an annual Angelman syndrome advocacy event that features a science summit, educational workshops, and a star-studded fundraiser, where more than 1,000 attendees from around the world come together.

So understandably, 12-year-old Tamara Crawley and her mother Brandy Stewart were eager to go. Brandy did manage to win a free pair of tickets (valued at $175 each!) but the realities of travel and lodging costs proved a major obstacle.

Brandy started a Kickstarter campaign, and the community rallied behind her cause.

“I would use the donations for gas getting there, the hotel which is almost $500, and food for us during the trip.  We would check in on Thursday, the 6th, and leave on the 9th of December,” said Brandy.  “I’ve been trying to sell some of my stuff to raise money for the trip.”

And her modest request was a huge success!

Tamara and Brandy were able to attend the December 7th and 8th event, and Brandy described it as a trip of a lifetime.

“I started crying because seeing a lobby with Angelman families, from all over the world, was amazing.  We met other people we had connected with before on Facebook for the first time in person.”

And we wouldn’t fault Tamara and Brandy for loving the fancy gala event (which boasted celebrity attendees like Colin Farrell, Taylor Lautner, and others), but that was more of an after thought for them.

“The gala was fun, but my favorite part was walking in and seeing all of the people who came from all over the world, who have kids with Angelman or know someone who lives or lived with Angelman. Seeing all those people who go what I go through with Tamara made me realize I’m not alone in this world.”

Brandy was so thankful, she even donated any excess donations she and Tamara had received ($300) to the Angelman fundraiser charity.

Talk about paying it forward!

Not only was the community support such a beacon of love and hope for Tamara and Brandy – but the opportunity to connect with other families was  a life-changing event.

 


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