2022 Annual SMA Conference

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2022 Annual SMA COnference FAQs

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 conference@curesma.org

 I missed out on pre-registration, can I register on-site?
  • Pre-registration for this June's 2022 Annual SMA Conference in Anaheim, CA is closed as of April 22nd. If you missed out on pre-registration, you will still be able to register onsite. 
  • If you plan on attending and registering onsite, please email conference@curesma.org with the full name(s) and age(s) of the attendee(s) so we can be sure to accommodate you and set you up to register onsite. 
  • We will send you your link to book your discounted hotel room and purchase discounted Disney theme park tickets if you are interested. 
  • Onsite registration will be open on Wednesday, June 15th from 5:00pm - 7:30pm at the Cure SMA Registration Desk, located in the Disneyland Hotel's Fantasy Tower in the main hallway outside of the Grand Ballroom. Registration will also be open from 9:00am - 5:30pm on Thursday, June 16th, 7:00am - 5:30pm on Friday, June 17th, and 7:30am - 4:30pm on Saturday, June 18th. 
  • Name badges will be made available once you have registered onsite. 

What does my conference registration fee include?
  • Your registration fee includes all conference festivities, including the Meet & Greet, Researcher Relay Race, Family Friendly Researcher Poster Session, Children’s Program, some meals, general sessions, conference workshops, conference materials, and a Cure SMA Evening at the Park. 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 Friday through Monday and will be your entry ticket to all conference events.

What is the discounted room rate at the Disneyland Hotel, Disney’s Paradise Pier Hotel, and Disney’s Grand Californian Hotel & Spa?
  • The special room rate for registered conference attendees is $279 per night (plus tax) at the Disneyland Hotel. The special room rate at Disney’s Paradise Pier Hotel is $259 per night (plus tax), and $349 per night (plus tax) for Disney’s Grand Californian Hotel & Spa. 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?
  • To request an accessible room please click here and fill out the accessible room request form.  Please note you must have an existing room reservation at the hotel in order for us to switch your reservation to an accessible room. In order to complete the accessible room request form, you must fill in your hotel confirmation number on the form.

  • By requesting an accessible room through the request form, 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 our requests. 

Are any meals included with my conference registration?
  • ​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 – Disneyland Hotel has a pool complex which includes two retro-themed pools, two whirlpool spas, cabanas, and two monorail waterslides.

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 $100 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.

What is the Children's Program and is my child eligible to attend?
  • 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 conference, one is for children under the age of 3 and the other is for children over the age of 3.
     
    The children’s program is run by volunteers who are not responsible for any medical care, medicine disbursement, bathroom assistance, feeding responsibilities or wheelchair/stander transfers.  Parents or their medical caretakers will be notified via cell phone or text message to assume those responsibilities.  Any child who requires any breathing support, cough assist, or suction cannot be left in the children’s program without a nurse or caretaker.

Do I need to pre-register for workshops?
  • No, pre-registration for workshops is not required.

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, June 7th. 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 ensure 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 Adults with SMA Scholarships and General Conference Scholarships available to help individuals with SMA and families attend the upcoming Annual 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 year’s conference. It also covers one hotel room for 3 nights at the hotel the conference is being held at. This program is automatically offered to all newly diagnosed families that contact Cure SMA. Cure SMA will reach out to all qualified individuals once conference registration has launched. This program is for all families newly diagnosed since the last in person conference in 2019.
  • The Adults with SMA Sponsorship offers adults with SMA ages 18 and older, as well as one caregiver, waived registration fees, a stipend for travel, and one hotel room for 3 nights for the Annual SMA Conference. This program is automatically offered to all adults with SMA ages 18 and older. Cure SMA will reach out to all qualified individuals once conference registration has launched.
  • For families who are not newly diagnosed, we also have General Conference Scholarships available to help waive the registration fee costs to attend the conference. Families looking to receive a general conference 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.

How do I apply for a scholarship to attend the Annual SMA Conference?
  • To apply and submit a conference scholarship application, please email conference@curesma.org

What is the Newly Diagnosed Program and when does it take place?
  • The Newly Diagnosed Program will begin on Thursday, June 16th from 12:00pm to 3:00pm. 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.

How can I purchase discounted Disney Park tickets? 
  • The discounted Disney Park tickets offered for attendees registered for our meeting will be available for purchase on February 24th. Once the online store has opened up, all registered attendees will receive and email to purchase these tickets. The on-line ticket store will close Wednesday, June 15th. These specially priced theme park tickets will not be available for purchase on-site at the resort. 
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What are the COVID protocols & precautions for the 2022 Annual SMA Conference?
  • Closer to the date of the conference, we will confirm specific masking and vaccination requirements per local, state, federal and Disney rules and regulations
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What kind of transportation is there from the airport to the hotel?
  • Please view the PDF transportation guide below to see different options able. 
conference_2022_transportation_guide.pdf
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