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How a Mobile App Transformed the Galactosemia Foundation Conference

DoubleDutch and the Galactosemia Foundation Conference Bring a Community Together

An Opportunity to Make an Impact

A few months ago my long time family friends, Evelyn and Dane, had begun to fundraise for their trip to the Galactosemia Foundation Conference in Orlando, FL. I had committed to helping them and their son, DJ (with classic Galactosemia*), make it to Florida, but I knew that I was in a special position to do so much more for their experience. With the support of DoubleDutch and my team I was able to donate our services to create a mobile app for their event!

*People effected by galactosemia are unable to fully break down the simple sugar galactose. Galactose makes up half of lactose, the sugar found in milk. If an infant with galactosemia is given milk, substances made from galactose build up in the infant's system. These substances damage the liver, brain, kidneys, and eyes and can be fatal if the infant is not put on a galactose restricted diet. Persons with galactosemia cannot tolerate any form of milk (human or animal).

Bringing the App to Life

Given the amount of work already ahead of the event team, I had prepared for the app to be a more basic implementation. I was wrong.

We were able to pull out all of the stops. The event app included a highly detailed agenda representing each of the special age groups, from 0-2 years (known as “Mini G’s”) all the way up to the 26+ group (the “Agers”). Oh yes, even the very important “Visit to Disneyworld” agenda item was listed. There were separate app sections for sponsors, silent auction items, travel information, speakers, and more. It truly brought their website and paper brochures to the digital world and gave people attending the event or participating from afar the ability to engage with one another.

One app section in particular, the scavenger hunt, took the event to a new level. By utilizing DoubleDutch's customizable app sections, attendees were prompted to locate various items and post photos of them to the app's activity feed.

With 53 things to discover throughout the conference, the scavenger hunt created an environment for attendees to meet each other, reunite with old friends, and to celebrate what makes them unique from the rest of the world.

Some of my favorite examples were: “Puppy Love” which asked for a photo of a new four-legged friend; “Throwback Thursday”, for posting pictures at past conferences; and “Thank you, Thank you”, which encouraged attendees to add a photo of themselves using one of the items donated by sponsors (many of whom posted a photo of their friends using the DoubleDutch app!).

The scavenger hunt section alone generated over 4,000 visits, which shows just how engaging the event app was.

“Now we are not alone... We are together”

The impact of the app, however, reached far beyond a scavenger hunt or a well-tailored agenda. It brought people together from all over the world, showing the faces and spirits of people experiencing the same life altering disorder that they or their family are.

I had anticipated that this would be a “fun” app and that connections would be made, but I was blown away by how far reaching it actually was. That was made even clearer after reading a post on the Galactosemia Foundation’s Facebook page from a young girl in Brazil whose brother battles with the condition. The family was unable to attend due to financial constraints, but had been following along the entire conference with the mobile app.

“Everyday, my mother comes to me and ask [sic] for translate what are you talking about. So I translate to Portuguese and she smiles,” said Bruna. “We don’t know other people with Galactosemia... now we are not alone... we are together!”

The Galactosemia Foundation Conference was transformed by our partnership, and exceeded any expectations through the hard work of the generous event team and the impactful participation of a global “family” of users. It was a pleasure to be a part of this implementation.

4 Ways a Mobile App Transformed the Galactosemia Foundation Conference

1. Technology. The Galactosemia Foundation Conference has been around for 15 years, and even started out with brochures typed on a typewriter. This was their first time introducing a mobile app to the conference and the impact it had was incredible across the board.

2. Knowledge share. The mobile app acted as more than just a way to find information about the conference. Families used the platform to share their favorite dietary substitutes, helpful websites, and tips for day to day living.

3. Putting a face to a name. Through the mobile app, attendees were able to meet others with Galactosemia before even getting to the conference. The event app acted as an “icebreaker” for attendees who hadn’t seen each other in the last two years or who had never attended the conference.

4. Bridging a community. By allowing families affected by Galactosemia to follow along from other states, countries, and continents, the event app created a close environment to share their similarities and celebrate the fact that they were not alone.

By DoubleDutch Insider | August 26, 2014

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