BRENTWOOD, Calif. — Eleven-year-old Emma Pruitt's support team includes her mom Shannon and twin brother Quinn.

Emma has a rare disease called Angelman syndrome, which can impact things like balance and speech. But since undergoing a clinical trial last year, Shannon noted that Emma is having positive results.

"There’s a lot of little things that make her more comfortable in her body, more harmonious in our home, and safer in her environments, which is all we want for her ultimately in life," said Shannon.

Angelman syndrome, or AS, is a rare neuro-genetic disorder that occurs in one-in-15,000 live births — with no cure. In 2017, Quinn started an annual fundraiser for AS by selling $4 cups of cocoa after he felt nervous about Emma starting school.

"Emma was so new, I thought that she was going to get bullied or teased because she’s not like everyone else, and so I wanted to raise awareness and money to one day, hopefully find a cure," said Quinn.

The fifth anniversary of the fundraiser was held on International Rare Disease Day, and for the first time — due to the pandemic — functioned both virtually and as a drive-thru. Quinn has built a community of supporters both near and far, and to date, Quinn’s Cocoa 4 A Cure has raised over $230,000 for AS.

“Even if we made $100 over five years, it just makes me so proud for everyone to donate, and every donation is a big step", said Shannon.

While no cure has been found, there have been strides toward one since Quinn started his fundraiser. Five years ago, there was only one therapeutic in clinical testing. Now there are more than 21 drug companies focused on delivering a cure for AS.

"How much has changed in just five years, which is why this money and this awareness and this community effort that is near and far, like I said, has made such a huge difference, for Emma and for so many angels," said Shannon.

The progress in therapeutics, as well as Emma’s progress in her clinical trial, has brought hope to this family for Emma’s future.

"Emma is starting to be able to communicate with her family in a way that other people, if she’s given the right tools, will also be able to understand her," said Shannon. "And that’s all — quite honestly as her mother — that’s all I really want for her."

So, while Emma may be considered different, Quinn said it’s her difference that makes her special, and the generosity and kindness of his donors is making a difference in their lives.