We hope you are planning on joining us in Orlando, FL, from December 19-21, 2024, for our 38th Annual Family & Scientific Conference, or for our SPIRIT Conference for adults with MPS and ML! Part of the magic of our conferences this year – aside from celebrating 50 years! – are their proximity to Walt Disney World. We truly hope that our attendees will take advantage of this fact, and spend some quality time with their families before or after sessions on Disney property.
Free Things to Do at Disney World
Disney World can be pricey, but there are still fun, free things that families can do in and around the parks to make their experience magical:
#1. Get a Free Button from your Resort or Guest Services
Sometimes you might see people walking around Disney World with a giant button that might say something like, “It’s my Birthday,” or “I’m Celebrating!”
If you want one of these buttons, all you have to do is let a cast member know at any guest services booth: just let them know if you’re here for a birthday, anniversary, or whatever it is you’re celebrating!
Note: Sometimes (not as much as they used to pre-Covid, but sometimes!) you will get a little extra magic because you’re wearing the button, like a free cupcake for your birthday.
Ride the Skyliner
The Disney Skyliner is a fan favorite at Disney World! It was added as a form of transportation in 2019, and can be fun to ride (unless you are afraid of heights, in which case you probably shouldn’t…).
You do not have to be staying at a Disney resort to take advantage of all their free transportation options. In fact, riding the free transportation options takes up a good portion of this list (because they’re so much fun!).
You can ride the Skyliner to EPCOT, Hollywood Studios, the Art of Animation & Pop Century Resorts, the Caribbean Beach Resort and the Riviera Resort. You can also access the Swan & Dolphin Resorts, Yacht and Beach Club Resorts and the Boardwalk Resort via the EPCOT Skyliner.
Pro Tip: Ride the Skyliner over EPCOT at night around 9 pm to see the fireworks!
Ride the Boats
The boats are a fun and relaxing way to spend an afternoon.
You can ride a boat from the Magic Kingdom entrance to several of the resorts across the lake, including the Polynesian, Grand Floridian, Fort Wilderness and Wilderness Lodge. You can also ride a boat from Hollywood Studios and the back entrance of EPCOT to the Boardwalk, Yacht & Beach Clubs and Swan & Dolphin Resorts.
If you’re hanging out at Disney Springs, you can take a boat across the lake to Saratoga Springs, or downriver to Old Key West or Port Orleans.
Good to Know: You do have to go through security to access most of the boats.
Pro Tip: Ride the boat from Polynesian or Grand Floridian Resort around 9 pm to see the fireworks from the water.
Ride the Monorail
Another fun form of transportation is the monorail. Perhaps not quite as fun as riding the boats or the Skyliners, it’s still free. It’s also super magical if you can time it just right to see the fireworks (but you only get the view for a second).
You can take a monorail from the Magic Kingdom entrance to the Contemporary, Polynesian and Grand Floridian resorts. You can also get a monorail from the entrance to EPCOT that goes to the Transportation and Ticket Center, where you can transfer to the resorts monorail.
Explore the Boardwalk
All Disney resorts are fun to visit, but the Boardwalk Resort is the best. On the back of Disney’s Boardwalk Resort is an actual boardwalk, full of restaurants, stores, games and entertainers. And it’s all situated on a picturesque lake!
There is so much to do at the Boardwalk. You can rent bikes, play the carnival games, visit the dancehall, or just enjoy the atmosphere. It’s also a great place from which to grab a boat or ride the Skyliner.
Visit All the Disney Resorts
The best thing to do on a free day at Disney World is to visit all of the Disney resorts, or in other words, go resort hopping.
Each resort has its own charm and style, with unique decorations, gift shops, and restaurants. The Animal Kingdom Lodge even has real animals wandering around the grounds (fenced in, of course!).
Besides just exploring the lobbies and shopping in the gift shops, there are a lot of other free things to do at Disney at the resorts, like pin trading, and other resort activities.
Pin Trade Around the Resorts
Pin trading is popular at Disney. Guests can buy souvenir pins in any gift shop on property. You can also find lots of pins online, which people like to do beforehand so that they have a lot to trade.
Every gift shop and front desk has a pin board you can ask to see. If you find any pins on the board you like, you can trade one of your pins for it! Some resorts even have secret pin boards, so you pick a number and get a surprise pin (but you don’t have to trade for it if you don’t like it).
Try Some of the Resort Activities
There is always a lot going on at any given Disney resort. You can find a list of activities at each resort posted by the pool.
Some of these activities are going to cost money and require advance registration, like an animation drawing class. Others will be free, like roasting marshmallows by the fire (though you can pay for chocolate and graham crackers).
Be sure to check out the posted activities, or ask at the front desk.
Tour a Disney Vacation Club Property
Another free thing you can do at Disney is to tour a Disney Vacation Club property. The Disney Vacation Club (DVC) is a program that lets you buy a timeshare in a Disney property, and then use points to stay at Disney year after year. You can sign up for a tour in the lobby of any hotel, or at any theme park. Disney will provide transportation to take you to the site you choose for the tour, and at the end you will get a free pin!
Note: don’t sign up for a DVC membership (that is NOT free!)
Visit Disney Springs
Disney Springs is the huge entertainment and shopping complex run by Disney. It is on the lake across from Saratoga Springs Resort, and it is HUGE! There is so much to do there!
It’s free to enter Disney Springs (but you will have to go through a security checkpoint). But then there are a lot of things to spend money on once you’re there! From sandwiches at Chef Mickey’s to a show by Cirque du Soleil, or fine dining on the water to a convertible boat ON the water, there are so many things to do at Disney Springs. You could easily fill up a whole day here.
Pro Tip: Don’t forget to bring pins to trade! A lot of shops will have pin boards, or cast members with pin lanyards.
Watch the Fireworks!
The best way to end your day after exploring all the free things to do at Disney is to watch the fireworks (for free, of course!). Here are some of the best free spots to watch the Disney fireworks:
About the Author: Julia Rexford is the cousin of Society board member Jason M., and daughter to Wayne, both of whom have MPS II. She (along with Wayne, Jason and the rest of their family) has been to Disney World countless times over the years, and has developed some content to help families attending the 38th Annual Family & Scientific Conference or SPIRIT Conference have the best Disney experience possible. Julia is also the author of a travel blog, where you can find more Disney insights and tips: Planned Wanderings.
We hope you are planning on joining us in Orlando, FL, from December 19-21, 2024, for our 38th Annual Family & Scientific Conference, or for our SPIRIT Conference for adults with MPS and ML! Part of the magic of our conferences this year – aside from celebrating 50 years! – are their proximity to Walt Disney World. We truly hope that our attendees will take advantage of this fact, and spend some quality time with their families before or after sessions on Disney property. We hope that this resource will be helpful, but we also recommend reviewing Disney World’s free Accessibility Planning Guide, or visiting Disney World’s dedicated accessibility web pages for guidance on planning your trip.
How to Get to Disney World
Where to Park at Disney World
If you are driving yourself to Disney and are not staying at a Disney Resort, the best place to park is Disney Springs, which has free parking and is located across the street from the host hotel for the 38th Annual Family & Scientific Conference. Guests can get a bus from Disney Springs to any Disney Resort, and from there can use the free transportation options to get anywhere on Disney property. Just be sure to budget enough time for transportation!
Free Transportation at Disney World
Once you get on Disney property, there are many free modes of transportation, including:
All forms of transportation at Disney are handicap accessible! Just let the cast member at the entrance know you will need an accessible ride and tell them about any mobility aids that may be riding with you, and they will direct you to the best boarding area.
Further Reading
If you would like more information about getting around Disney World, the author has an even more in-depth article on her blog about Disney transportation.
If you have any more questions about visiting Disney World, check out the Plan Disney blog, with lots of frequently asked questions. You can even ask your own question!
About the Author: Julia Rexford is the cousin of Society board member Jason M., and daughter to Wayne, both of whom have MPS II. She (along with Wayne, Jason and the rest of their family) has been to Disney World countless times over the years, and has developed some content to help families attending the 38th Annual Family & Scientific Conference or SPIRIT Conference have the best Disney experience possible. Julia is also the author of a travel blog, where you can find more Disney insights and tips: Planned Wanderings.
In the early days of his career, a young scientist named Emil Kakkis found himself deep in the world of academic research, working with the renowned Dr. Elizabeth Neufeld. Their focus was on a rare genetic disease, MPS I, caused by a missing enzyme. With dedication, he and Dr. Neufeld managed a breakthrough: they produced the enzyme and successfully treated dogs with MPS I. Yet, despite this progress, there was no clear pathway to bring the treatment to human patients. The project, on the verge of being shelved, seemed destined to become another entry in a scientific journal, rather than a life-altering therapy.
Then, at a critical moment, he met Mark and Jeanne Dant, who introduced him to their five-year-old son, Ryan, who was living with MPS I. “At that moment, the science became real,” said Dr. Kakkis. “It became personal, not just academic.”
What followed was a hard-fought journey, powered by donations and dreams. Over time, their project gathered momentum, ultimately capturing the attention of biotech company BioMarin. Thanks to their backing, the therapy reached the finish line, and on February 13, 1998—what would become Ryan’s “lucky day”—he received the first enzyme replacement therapy (ERT). It was a treatment that would not only change his life but would allow him to thrive: Ryan grew up, got his driver’s license, graduated from high school, went to college, and eventually married. Today, 26 years later, Ryan still benefits from that very therapy.
Inspired by this success, Dr. Kakkis’s mission took on new life. At BioMarin, he pursued treatments for other MPS disorders, such as MPS VI, which included collaborating with Dr. Hopwood to develop Naglazyme after overcoming significant manufacturing challenges. Next, they worked on Vimizim for Morquio, pushing past initial beliefs that the disease was limited to bones to address its effects throughout the body. Later, at Ultragenyx, he led efforts to produce Mepsevii for MPS VII and saw it approved. Most recently, his team at Ultragenyx took on a gene therapy project for MPS IIIA from Abeona, moving the therapy toward a potential FDA approval that could offer the first treatment for Sanfilippo syndrome.
“Witnessing the transformation of the MPS Society from one of pure patient support to one of treatment access and policy has been exciting to see,” said Dr. Kakkis, “Now the next phase could bring more decisive single treatments for MPS diseases, and more hope for untreated families to finally be treated for the first time.”
Do you have MPS or ML, or know someone who does? Do you want to share your story? Click here to fill out a submission form for an opportunity to be featured on our blog.
We hope you are planning on joining us in Orlando, FL, from December 19-21, 2024, for our 38th Annual Family & Scientific Conference, or for our SPIRIT Conference for adults with MPS and ML! Part of the magic of our conferences this year – aside from celebrating 50 years! – are their proximity to Walt Disney World. We truly hope that our attendees will take advantage of this fact, and spend some quality time with their families before or after sessions on Disney property. That being said, we know that Disney World is a HUGE place and it can be overwhelming if its your first time visiting. With that in mind, Julia R. (more information on Julia at the end!) has been so kind as to develop a basic rundown on all things Disney. We also recommend reviewing Disney World’s free Accessibility Planning Guide, or visiting Disney World’s dedicated accessibility web pages for guidance on planning your trip.
Disney World Overview
There are four theme parks, two water parks, multiple mini golf courses, shopping venues, and resort hotels on the Walt Disney World property in Orlando, Florida. Also nearby are Universal Studios and SeaWorld.
Disney Theme Parks
Disney Springs
Disney Water Parks
Disney Mini Golf Courses
Accessibility at Disney World
Disney World prides itself on being one of the most accessible theme parks in the world. Guests who have accessibility needs are encouraged to visit Disney’s Accessibility pages on their website for guidance on mobility needs, service animal guidelines, transportation guides, and more. For additional information or requests, guests can also contact Disney’s dedicated disability services team:
Disney World Transportation
There are a lot of free transportation options available once you arrive on the Disney World property. If this is your first time at Disney, keep in mind it will take a while to get from place to place. If you are staying at a Disney resort, you can pick up transportation there. If you are not staying on property, you can drive to Disney Springs (where it is free to park), or take an Uber or shuttle from your hotel.
Disney Lingo
There are some phrases you might hear thrown around if this is your first time at Disney that you don’t quite understand. I’ll explain some of the common Disney lingo, so you know what’s going on:
Download the My Disney Experience App
A lot of things are done via app. If you download the My Disney Experience app before your trip, you can use it to book tickets, make dining reservations, and reserve a spot in a virtual queue. You can even use the app as your room key! In fact, the app does most things that a magic band would do, which is why you don’t have to purchase a magic band.
If you don’t want to use the app, you can also create an account online, where you can link your ticket reservations and create dining reservations.
You can link up your account (online or in the app) with other family members who also have a My Disney account.
Christmas at Disney World
It’s fun to be at Disney World so close to a major holiday, but it can be crazy crowded!
One of the most famous Christmas decorations at Disney World is the iconic giant gingerbread house in Disney’s Grand Floridian Resort, for which they start baking the gingerbread in July! Luckily, the gingerbread they sell in the house is freshly baked!
You can also buy tickets for Mickey’s Very Merry Christmas Party. This will get you into the park after hours, where you can indulge in holiday treats and enjoy the festive atmosphere!
I have never attended any of the holiday events, but I have been to Disney World in December, and, fair warning, it was the absolute MOST crowded I’ve ever seen Disney World! The closer to Christmas it is, the more crowded the parks will be, so be prepared and set realistic expectations for crowds, wait times, etc.
Disney World Tips
I want to end this article with a couple of tips to help you get the most out of your time in Disney World:
I hope this Disney World guide will help get you started planning your first trip to Disney (or your second) (or your third…)!
About the Author: Julia Rexford is the cousin of Society board member Jason M., and daughter to Wayne, both of whom have MPS II. She (along with Wayne, Jason and the rest of their family) has been to Disney World countless times over the years, and has developed some content to help families attending the 38th Annual Family & Scientific Conference or SPIRIT Conference have the best Disney experience possible. Julia is also the author of a travel blog, where you can find more Disney insights and tips: Planned Wanderings.
Our 2024 Fall edition of Courage is now available electronically to view or download! Click to read the latest information in research, clinical trials, family support, development, advocacy, and more. Thank you for sharing your photos and stories with us!
From Terri Klein, President & CEO:
Over four years ago, Dr. Matthew Ellinwood came to work side-by-side with the National MPS Society Board of Directors and team. I knew then that he was the perfect researcher to fill the inaugural role of Chief Scientific Officer (CSO). His accomplishments while building out the Science Program for the Society have been invaluable, and his astounding efforts in newborn screening, state advocacy, new networks, advocacy, and publications have shown us that the future is bright for the patient community.
It is with gratitude for his many years of service that I now share Matthew‘s intention to depart from his full-time role as CSO in the early spring of 2025.
Science is a vital mission of the National MPS Society, and while it is bittersweet to see him move away from a full-time capacity, we look forward to continued collaboration with Matthew in the future and the opportunity to bring a new CSO on board.
Congratulations Matthew!
“When I began my professional journey, I knew I wanted to find a role that allowed me to make a positive difference in the world. When I entered into the MPS field in 1998, I got to know MPS families, the Society, and my research colleagues, and I quickly knew I had found a scientific and career home. In the intervening quarter century, our broader community has accomplished so much! It is indeed impressive to think that beyond HSCT, we had no treatment options in 1998. We now have 5 drug approvals, national implementation of newborn screening for two MPSs, state screening for a third MPS disorder, and potential accelerated approval looming on the horizon for both gene therapy and second generation ERT.
As I depart from my active role next year, I do so knowing all of these tremendous and transformative accomplishments will continue, until we can reach every MPS and ML II/III patient with effective treatments at the optimal time for the best outcomes. The future is bright, and I know my successor will help our community move forward.
I also wanted to take this moment to thank you all for making this such a warm and gratifying community to work with. I feel so deeply lucky and blessed to have arrived within your midst, and to have done what I could to advance our shared mission goals.”
– Dr. Matthew Ellinwood
