Join us at FUTURES!
October 11-13, 2019
Disneyland Hotel | Anaheim, CA
- Two fun, information packed days
- Offered at no charge to attendees
- Panel-based presentations around Family, Fitness, Friends, Fun, Function, and Future.
- Future of Duchenne Gene Therapy Symposium
- Resource Fair
- e-Gaming Lounge
- Free on-site childcare
All panels will provide a collaborative and comprehensive discussion on managing the needs of Duchenne with the current standards of care.
FUTURES is designed to provide families with the information, support and motivation they need to live the best life possible while navigating the Duchenne journey.
FUTURES has adopted a new framework for helping patients families and caregivers understand the complexities of Duchenne: "F" Words. First conceptualized in a groundbreaking study to convey issues faced by children with disabilities, "F" Words helps connect best practices across research, treatment and family life. For more information on “F” Words approach please visit CanChild.
Advancing Function can improve quality of life and slow the progression of the disease. FUTURES will cover how to improve patients’ daily Function:
- Use of Standards of Care to support patients
- Finding the silver linings in Duchenne
- Effectiveness in a comprehensive healthcare team
Family support is crucial to living the best life possible for each family member. FUTURES will offer resources to help families defy expectations.
- Navigating the stages of grief
- Accessing resources for medical care and equipment
- Planning for the future: college, career and beyond
- Learning how to not let Duchenne define who you are
- Support with decision making
Fitness isnt always “physical.” Mental fitness is important for the entire family. FUTURES will offer opportunities to find ways to refill your cup.
- Activities that support social and emotional well-being
- Behavior management techniques
- Stretching activities
- Supporting siblings
Finding the joy and having fun is important to living a happy life. FUTURES will cover:
- Accessing your environment
- Independent functioning
- Finding your passion
- Thinking out of the box
Engaging in activities with friends promotes self-advocacy and increases self-esteem. FUTURES will cover:
- Promoting inclusion
- Focusing on abilities rather than disabilities
- Optimizing every day and naturally developing social situations
- Getting involved
- Visualizing limitless opportunities
There is a future for Duchenne patients and families. FUTURES will cover:
- Updates on gene therapy and gene editing
- Stories of ordinary people doing extraordinary things
- Setting goals and reaching them!
Below is an overview of the CureDuchenne 2019 FUTURES national conference program. We will be releasing our full program to all FUTURES registrants closer to the date of the conference. We can’t wait to share the amazing speaker and panel lineup with you!
Schedule of Events
SCHEDULE OF EVENTS
In addition to numerous discussion panels, speakers, and the resource fair, FUTURES will be full of additional activities that are fun for the whole family! Use the link below to create your family’s personal agenda for the weekend. Don’t miss out on all the awesome social events we have!
Grand Lawn | Friday, October 11th 4pm-7pm | Apps, Beverages | Live entertainment
Help us kick FUTURES off with a welcome reception on the Disneyland Hotel's Grand Lawn! The reception is free for all registered attendees. There will be appetizers, beverages, and live entertainment for all.
FUTURE GENE THERAPY SYMPOSIUM
Grand Ballroom | Saturday, October 12th 6:30pm-8pm | Dinner, Beverages | Childcare + Kids Dinner
The panel will feature C-suite level staff from leading companies in the Gene Therapy/Editing space. The panel will provide the community a brief overview of individual corporate progress to allow for time to have the panel address questions from the audience.
The FUTURE Gene Therapy Symposium is free for attendees who RSVP. Childcare and the e-Gaming Lounge will be open during the Gene Therapy Symposium and dinner will be served to children free of charge as well. Please note how many children will be eating dinner on your RSVP form.
BRIGHT FUTURES CELEBRATION
Exhibit Hall | Sunday, October 13th 1pm - 4pm | Appetizers, Soft Drinks | Bring Your Family & Friends
Mark the end of your conference experience by attending the BRIGHT FUTURES CELEBRATION. Families, friends, exhibitors, sponsors, speakers, and the CureDuchenne Team will join forces to acknowledge the bright future ahead for the Duchenne community! Invite your network of support to play inclusive games, spend quality time with new and old friends and reflect on what we learned over the weekend. Special guest appearances and raffle prizes to be won! Free for all to attend. Food and soft beverages provided.
South Ballroom A | Saturday, October 12th 8am - 8:30 pm | Sunday, October 13th 8am - 1:00 pm | All Ages
Back by popular demand, the 2019 FUTURES e-Gaming Lounge will offer opportunity for our kids of all ages to get in the action. The Lounge will contain 3 large gaming stations each set with 82” screens, gaming consoles (Nintendo Wii, PlayStation, XBOX) and controllers, including adaptive options for ease of use for all. The Lounge will be equipped to provide gaming for up to 24 gamers at a time.
To further maximize the gaming experience, the room will be transformed into a futuristic environment with lighting effects as well as a stocked healthy snack bar. For our guests interested in observing the gamers, lounge seating will be available. e-Gaming Lounge Control staff will remain on-site throughout the hours of operation.
Activation Stations will be placed throughout the conference all weekend for exciting, interactive, and inclusive activities for all FUTURES attendees! Activations will represent the 6 "F" themes in some way: Family, Function, Fitness, Fun, Friends, and FUTURE. These pop-up stations will unite the Duchenne community and keep you on your toes as you move between panels. Visit ALL the Activation Stations and you’ll be entered to win a prize!
CURE DUCHENNE CORNER
North Lounge | Saturday, October 12th 8am - 8:30 pm | Sunday, October 13th 8am - 1:00 pm
Visit the CureDuchenne Corner for an opportunity to meet staff members and learn more about the various facets of CureDuchenne. Dial in to community on Duchenne Xchange, grab the 2020 CureDuchenne Cares schedule of events and sign up for the CureDuchenne Newsletter. If you have questions about how to get more involved, the CureDuchenne team has answers for you!
Thank you to the generous sponsors and partners whose contributions make the CureDuchenne 2019 FUTURES National Conference possible. We appreciate your support!
Exhibit Hall | Saturday, October 12th 8:30 - 5pm | Sunday, October 13th 9am -1:00pm
With 20 + vendors, the CureDuchenne 2019 FUTURES national conference Resource Fair will offer opportunity for conference attendees to observe durable medical equipment, interact with vendors, company representatives and engage in conversations with individuals of various expertise.
RESOURCE FAIR EXHIBITORS
OCTOBER 11-13, 2019 at the Disneyland Hotel | Anaheim, CA
CureDuchenne holds the comprehensive two-day conference “FUTURES” once a year. It is offered at no charge to all attendees. With a focus on working towards positive futures for all in the Duchenne community, this conference is designed to provide Duchenne families with the information, support and motivation they need to live the best and longest life possible.
The CureDuchenne 2019 FUTURES national conference is taking a holistic approach to Duchenne in these six categories: Family, Fitness, Friends, Fun, Function and Future. This year, the conference will take place at the Disneyland Hotel in Anaheim, CA. Over the course of two days, there will be a series of panel-based presentations circling these topics with many experts from the field such as Brenda Wong, MD, UMass Memorial Center, Eric Olson, PhD, UT Southwestern, Exonics Therapeutics and Dongsheng Duan, PhD, University of Missouri plus many more.
FUTURES will take place at the Disneyland Hotel in Anaheim, CA. We have secured discounted room blocks at both the Disneyland Hotel and the Sheraton, which is right down the street. These are the two hotels we recommend, but it is not mandatory to stay here in order to attend the conference.
- Distance from FUTURES: On Property
- Discounted rate of $269 per night* final reservations by September 11, 2019
- Distance from FUTURES: 1.9 miles
- Discounted rate of $159 per night* final reservations by September 11, 2019
*Room block is limited in supply and will only be available while space lasts
Anaheim Resort Transportation (ART)
- Board bus 3 at Sheraton Park bus stop
- Two (2) passengers with accessibility needs per bus
- Service: Every 20 minutes
- Tickets and information available at www.rideart.org
Daily Standard Parking Rates at Disneyland Hotel - applicable to those who are driving to the conference and not staying in the hotel
- Self-parking- $25 per vehicle
- Valet parking- $35 per vehicle
- These charges are for one in, once out privileges and not for in/out privileges
The Disneyland Hotel in Anaheim, CA is located within easy driving distance to 3 airports in Southern California.
- John Wayne Airport (SNA): 25 minutes via car
- Long Beach Airport (LGB): 29 minutes via car
- Los Angeles International Airport (LAX): 45 minutes via car
The CureDuchenne FUTURES Travel Assistance Program is offered to individuals with Duchenne, their immediate family, and/or caregiver(s) with significant financial need (based on the FPL standards below) who are registered for the conference. Travel Assistance is based on a first come, first-serve basis for as long as funding is available and based on the sole discretion of CureDuchenne. Submitting the application does not guarantee acceptance into the program. Your application will be reviewed, and you will be notified of your status within 48 business hours of receipt.
Assistance is offered to families attending the conference in the form of comped hotel rooms. The CureDuchenne FUTURES Travel Assistance Program covers the cost of the room, taxes and valet parking for 1 vehicle for Friday night (10/11) and Saturday night (10/12).
You must check in Friday and check out Sunday. Incidental charges are up to the responsibility of the recipient. You will be placed at the Sheraton or Disneyland Hotel based on availability and ADA needs.
The CureDuchenne FUTURES Travel Assistance Program is offered to individuals with Duchenne, their immediate family, and/or caregiver(s) with significant financial need (based on the FPL standards below) who are registered for the conference.
Once you register for FUTURES, you will be prompted with a link to apply for this program.
Travel Assistance Program Eligibility Criteria
- For individuals under 18 years of age, a parent or legal guardian must apply on their behalf.
- Applicants must be U.S. citizens or permanent residents.
- Applicants must have a confirmed Duchenne muscular dystrophy diagnosis or have an immediate family or household member with a confirmed diagnosis.
- Applicants must reside greater than 180 miles away from the venue where the event is being offered.
- Applicants must demonstrate financial need: household income at or below adjusted 400% U.S. Federal Poverty Level (FPL). CureDuchenne may request financial documents such as recent tax returns, 1099s, Social Security benefit statements or W-2s for review to determine eligibility (see chart below).
Federal Poverty Level (FPL): an income threshold that varies by family size, which outlines the estimated minimum income required for a household to buy food, clothing, transportation, shelter, and other necessities.
SOURCE: Federal Register, January 28, 2019
Should you need to cancel this reservation, you must contact email@example.com no later than September 26, 2019. Neglecting cancellation jeopardizes the potential for other eligible recipients to receive this assistance.
Yes! We are happy to announce that we have partnered with the Duchenne Family Assistance Program (DFAP) to bring more families to FUTURES.
If you believe you might be eligible for the CureDuchenne FUTURES Travel Assistance Program, please apply to that first and you’ll have the opportunity to have your contact information shared with DFAP for additional assistance (even if you are not eligible).
If you do not meet the eligibility requirements for the CureDuchenne FUTURES Travel Assistance Program, but you are interested in talking to DFAP about the assistance you’ll need in order to come to FUTURES, please do the following:
- Register for FUTURES
- Email FUTURES@cureduchenne.org with your contact information
- CureDuchenne will relay this message to DFAP, who will manage your case from there
Travel assistance with both CureDuchenne and DFAP has limited availability.
There will be free professional childcare on both Saturday and Sunday of FUTURES. Please make sure to sign your child up for childcare prior to the conference and make sure to include any relevant special needs your child has (physical, behavioral, mental, emotional, etc.) so we can make sure they are accommodated appropriately. The childcare room will be an inclusive and fun atmosphere for all ages and abilities. There will also be designated quiet spaces for any children who need a little time away from people and noises.
The childcare room will be staffed by the trusted nanny referral service, Nanny Poppinz. We will be providing a “mobile daycare” including playpens, changing mats, toys, board games, arts and crafts, puzzles, play dough, cots, paint, and books.
If at any time during the day your child needs assistance with using the bathroom, takes medication during the day, or has a special feeding procedure, you will be contacted by a nanny via cell phone. Always make sure to keep your cell phone handy, and on vibrate or low ring.
Yes, meals will be provided at no charge to conference attendees. The meal schedule will go as follows:
Friday, October 11th - Welcome Reception, 4:00pm-7:00pm
- Appetizers, beverages
Saturday, October 12th - Conference, 7:00am-5:00pm
- Breakfast, buffet lunch
Saturday, October 12th - FUTURE Gene Therapy Symposium, 6:30pm-8:00pm
- Dinner (RSVP Only)
- Children can stay in childcare/e-Gaming lounge and have dinner
Sunday, October 13th - Conference, 7:00am-1:00pm
Sunday, October 13th - Bright FUTURES Celebration, 1:00pm-4:00pm
- Food & Beverage
We are happy to accommodate any guests who have food allergies and/or dietary restrictions while at the conference. Please make sure to list these allergies/dietary restrictions on your registration form.
If you did not already do this, please email FUTURES@cureduchenne.org with your contact information and said allergy/dietary restriction so we can plan ahead. If something arises on the day of the conference, our event staff will work to accommodate you and your family as quickly as we can.
The Disneyland Hotel has ADA compliant exit/entrances, restrooms, ramps, and elevators. We will be sure to make the “Pathways to Accessibility” as clear as possible using big arrows on the floor and signs throughout the venue to direct you to the nearest bathroom, ramp, door, and elevator.
If you have any questions about accessibility, directions, or event information, just locate one of our “Ground Controllers” with the blinking blue lights around their necks, and they’ll lead you to the easiest and most accessible route!