Cure SMA Annual Conference

2017 Annual SMA Conference

June 29 - July 2, 2017
Disney’s Contemporary Resort | Orlando, FL

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The following are some of the most frequently asked questions about the Annual SMA Conference. If you have additional questions please feel free to email

What does my conference registration fee include?

Your registration fee includes all conference festivities, including the Meet and Greet, Researcher Relay Race, Family Friendly Researcher Poster Session, some meals, Children’s Program, general sessions, conference workshops and conference materials. At registration, you will receive your conference folder, conference booklet, your conference name tag, as well as a waterproof attendee wristband. This wristband must be worn from Thursday through Sunday and will be your entry ticket to all conference events.

What is the discounted room rate at Disney’s Contemporary Resort?

The special room rate for registered conference attendees is $226 per night (plus tax) at Disney’s Contemporary Resort. A limited number of rooms are reserved at this rate so please book now before rooms sell out.

How do I book an accessible room at the hotel?

Submit an accessible room request form. Please note you must have an existing room reservation at the hotel and provide your confirmation number for us to switch your reservation to an accessible room.

By reserving an accessible room through the hotel, it is not guaranteed that you will receive an accessible room, it is simply a request. All accessible rooms are held by Cure SMA and will be assigned based on the number of requests and needs of the individual. Unfortunately, we will not have enough accessible rooms to accommodate all of our requests.

What meals are included in the family conference?

There will be several meals included in your registration fee for all attendees of the Annual SMA Conference. More information on these meals will be announced at a later date.

Is there a pool at the hotel?

Yes, Disney’s Contemporary Resort has a pool for all guests to enjoy.

Are conference attendees eligible to purchase discounted Special Meeting and Convention Theme Park Tickets?

Annual SMA Conference attendees will be eligible for advance purchase of specially priced discounted Disney Meeting/Convention Theme Park tickets. Ticket information will be available to registered attendees at a later date.

Is there helpful information on planning our Disney trip?

Disney Vacation Account is an online savings plan that can help you budget and save for your Disney vacation. There are no fees to set up and maintain your account, and you can withdraw the money you've contributed and have it fully refunded at any time! For information, please visit the Disney Vacation Account website.

Do I have to go to all the events and workshops?

No, you are not required to attend events or workshops during the conference but we do encourage conference attendees to attend as many as possible.

Will there be workshops for adults with SMA?

Yes, there will be several workshops for adults attending who have SMA.

Do I have to pay for my children to attend the conference?

Yes, there is a $55 fee per child to register children for the conference. This fee helps cover the cost of the conference events, meals and the Children’s Program. Only registered attendees can attend any conference event. Please note: Individuals under the age of 17 must be registered to attend the Annual SMA Conference with an adult or their registration and reservation will be cancelled and refunded.

Does an individual affected with SMA have to pay a registration fee?

Yes, individuals with SMA who attend our conference are required to pay the same registration fee as other conference attendees. Only registered attendees can attend any conference event.

Do kids attend the workshops with parents? If not, what is there for them to do during the day?

No, children do not attend workshops with parents unless a child requires medical assistance which prevents them from being left in the children’s program alone. We offer a children’s program during workshop hours for registered attendees so that children have a place to hang out and play while parents attend workshops throughout the day. There are two different children’s program rooms that have volunteers at the conference, one is for children under the age of 3 and the other is for children over the age of 3.

Can I leave my child with SMA Type I in the Children’s Program?

No, since the children’s program is run by volunteers they are not responsible for any medical care for children with SMA. A child who requires any breathing support, cough assist or suction cannot be left in the Children’s Program without a nurse or caretaker.

Are there any workshops my kids can attend?

Yes, there is a kids “Talk It Out” Kids Session. The session is facilitated by an SMA Dad, who is a Child & Family Psychologist, as well as an adult with SMA, who is an elementary education teacher. This session will provide SMA-affected children an opportunity to talk with each other about their lives. (Note: To encourage our children to truly “Talk It Out”, this session is open to children only and requires parental consent.)

Do I need to pre-register for workshops?

No, pre-registration for workshops is not required.

What kind of transportation is there from the airport to the hotel?

Thanks to Disney's Magical Express service, travelers can relax immediately upon arrival. This complimentary motorcoach and luggage delivery service transports attendees from Orlando International Airport to their Disney Resort hotel and back upon their return—and we take care of the luggage right from the plane to their room. More details will be available soon.

Information for guests with Disabilities at Disney World

Is parking included in the hotel room rate or is parking additional?

Standard self-parking is complimentary for registered attendees staying in the Annual SMA Conference hotel room block.

Are refunds provided for registration if we later decide we cannot attend?

Yes we do provide refunds for families who decide to cancel up until Friday, May 19th. There will be a $25 non refundable processing fee that will be deducted from the refund.

What is the Pre-Registration form for the Children’s Program?

In hopes of cutting down the wait times to register your child for the Children’s Program, we will be launching an online registration form which will allow you to fill out the information necessary to pre-register your child. Upon arrival to the Children's Program check-in, you will be given a form to sign that is already filled out with your child's information to ensure a smooth and timely check-in.

Should I Pre-Register my child for the Children’s Program?

We encourage families to pre-register their children for the Children’s Program even if they are unsure whether or not they will be leaving their child in the Children’s Program during workshops. This will insure that check-in will go quickly and smoothly.

Do you have scholarships available to attend the Annual SMA Conference?

Yes, we have a Newly Diagnosed Scholarship Program, as well as Financial Need Based Scholarships available to help SMA families attend the upcoming SMA Conference.

The Newly Diagnosed Scholarship Program waives the registration fee, for up to 4 immediate family members, of any SMA family whose child has been diagnosed since the previous years conference. You do not need to apply for the scholarship; it will automatically be given once a family first contacts Cure SMA.

For families who are not newly diagnosed, we also have financial need based scholarships available to help waive the registration fee costs to attend the conference. Families looking to receive a financial needs based scholarship are required to apply and can be placed on a scholarship waiting list. They will be notified if they are able to receive a scholarship. Please email for more information.

How do I apply for a scholarship to attend the Annual SMA Conference?

Submit a Scholarship Application.

What is the Newly Diagnosed Program and when does it take place?

The Newly Diagnosed Program will begin on Thursday, June 29th from 12:00pm to 4:00pm. This program is open only to newly diagnosed families who are part of the Newly Diagnosed Scholarship Program. The Newly Diagnosed Program is an introduction for newly diagnosed families to the conference, as well as an introduction to SMA. It is a way for newly diagnosed families to ease into the conference slowly without feeling as overwhelmed.

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Biogen Presenting Sponsor

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