2024 MDF Regional Conferences
MDF is Bringing our Conference to Los Angeles, CA
May 18, 2024
8:30 AM - 7:00 PM
Covel Commons
330 De Neve Dr, Los Angeles, CA 90095
Get Ready for a Great Time!
We are excited for our six Regional Conferences across the United States. These one-day conferences will connect local communities, bring DM resources to the DM community, and provide attendees with the opportunity to connect more closely with local researchers and clinicians.
Each Conference will include participation from local DM experts, researchers, and community members to provide a robust program including popular sessions from our past Annual Conferences.
Please note: the 2024 MDF Regional Conferences are for the DM Community and invited partners only!
Click here to learn more about the 2024 MDF Regional Conferences!
Registration Types & Fees
Our Regional Conferences will be in-person only events. Registration is completely free and includes access to general and breakout sessions, meals, and other activities. As a change from our previous Conferences, this event will not take place at the hotel.
Additionally, Conference Registration does NOT include a hotel room. See the Hotel Discount section below for information about finding accommodations in the area.
While there is no cost to attend, we thank you for considering an optional donation to MDF to help offset the cost of the event.
Hotel Discount
MDF has secured discounts at a nearby hotel in Los Angeles, CA. Accessible rooms are available and should be requested at the time of booking. Availability at these locations is limited, complete your booking today!
-
Kimpton Hotel Palomar - Starting at $259+ tax/night
Booking deadline is 5/3/2024
10740 Wilshire Boulevard Los Angeles California 90024
This hotel is roughly 1.6 miles from the conference location and will require a car or taxi/ride.
If booking by phone, guests must call 1-800-368-2544 or our Central Reservations number at 1-800-KIMPTON and use the code MX6.
Click here to complete your booking online. - Luxe Sunset Hotel - Sold Out
11461 Sunset Blvd. Los Angeles, CA 90049
More information coming soon!
Interested in other accessible options in the area? Find more choices at AccessibleGo.
Special Events in Los Angeles, CA
This Regional Conference will feature JOA focused programming! Join JOA Warriors Support Group Co-Facilitator, Ann Woodbury, in the JOA Lounge for a day of education and connection.
More information coming soon!
Agenda & Program
This MDF Regional Conference will include participation from local DM experts, researchers, and community members to provide a robust program including popular sessions from our past Annual Conferences. Scroll down this page find a list of session descriptions.
Note: The Regional Conference Sessions will not be split into individual Community Tracks.
Check back here for the latest updates to the program agenda and session details!
Saturday, May 18th |
||||
|---|---|---|---|---|
| Time |
Session |
|||
| 8:30 AM |
Check-in Opens |
|||
| 9:00 - 10:00 AM |
Breakfast |
|||
| 10:00 - 10:45 AM |
Welcome & Introduction to DM Resources |
JOA: Getting to Know You & Ice-Breaker Games |
||
| 10:45 - 11:00 AM |
Break |
|||
| 11:00 - 11:45 AM |
DM1: What You Need to Know |
DM2: What You Need to Know |
Mental Health and DM |
JOA: Stump the Doctor |
| 11:45 AM - 12:00 PM |
Movement Moment |
|||
| 12:00 - 12:15 PM |
Break |
|||
| 12:15 - 1:00 PM |
DM Research: What You Need to Know About Clinical Trials |
Sleep and Breathing in Myotonic Dystrophy |
JOA: Let's Talk About Feelings |
|
| 1:00 - 2:00 PM |
Lunch |
Platinum Sponsor Focus Group / Discussion (Tentative) |
Other Sponsor Focus Group / Discussion (Tentative) |
|
| 2:00 - 2:45 PM |
How Myotonic Dystrophy Affects the Heart |
Community Panel: Life Hacks |
JOA: Movement Moment |
|
| 2:45 - 3:00 PM |
Break |
|||
| 3:00 - 3:45 PM |
Industry Updates |
JOA: Games / Karaoke |
||
| 3:45 - 4:00 PM |
Break |
|||
| 4:00 - 5:00 PM |
Stump the Doctor: DM1 |
Stump the Doctor: DM2 |
||
| 5:00 - 5:30 PM |
Break |
|||
| 5:30 - 7:00 PM |
Dinner & Dance Party! |
|||
General Session Descriptions
Welcome & Introduction to DM Resources
The Myotonic Dystrophy Foundation (MDF) works to enhance the quality of life of people living with myotonic dystrophy and to drive research focused on treatments and a cure. This session will provide a comprehensive overview of the work of MDF as well as the readily available tools and resources for the community.
- The Myotonic Dystrophy Family Registry (MDFR)
- Research
- Toolkits and Publications
- Support Groups
- Other tools (Find-A-Doctor, Body Systems, Digital Academy, Dispatch)
Clinical Trial Readiness
Clinical Trial Readiness is the unofficial theme of the 2024 Regional Conferences. As academic and industry partners work to develop treatments and a cure for myotonic dystrophy (DM), it is more important now than ever that the DM community is ready to participate in trials. This talk will provide an overview of clinical trials and help attendees think about how to prepare for upcoming trials and studies:
- What are clinical trials?
- What is the process to get to clinical trials (discovery, preclinical research, preclinical development, clinical research)
- Phases of clinical trials
- What a clinical trial is like for a participant
- What are natural history studies?
- Important do’s and don’ts of clinical trials
- Other frequently asked questions (FAQs)
Movement Moments
MDF is proud to support the Myotonic Dystrophy in Motion movement which aims to unify, inspire, and encourage the international DM community to start moving. Movement can improve both the physical and mental well-being of people living with myotonic dystrophy. Movement moments are a great tool to break up sitting during sessions and could include a variety of activities:
- Stretching
- Chair yoga
- Tai Chi
Stump the Doctor
Stump the Doctor Sessions at the conference are an opportunity for community members to meet a leading clinical expert in myotonic dystrophy and ask their most persistent, challenging questions. These sessions are open Q&A format. Can you stump the doctor?
Industry Updates
During this session, representatives from biotechnology and pharmaceutical companies will provide updates on their drug development efforts in the DM field.
Breakout Session Descriptions
DM1 Overview
This session is for those new to the DM1 community and those seeking a refresher. A leading expert will provide a comprehensive overview of DM1:
- Causes and genetics underlying DM1
- How and when in life it can affect different systems of the body
- Tips for self-management of symptoms
- How to best work with your clinical care team to ensure the best quality of life
DM2 Overview
This session is for those new to the DM2 community and those seeking a refresher. A leading expert will provide a comprehensive overview of DM2:
- Causes and genetics underlying DM2
- How and when in life it can affect different systems of the body
- Tips for self-management of symptoms
- How to best work with your clinical care team to ensure the best quality of life
Community Discussion Panel
The Community Discussion Panel at the conference will be sessions led by MDF volunteer community leaders. Each regional conference will have a committee comprised of local community leaders who will help select panelists and topics. Examples of panel topics include:
- Life hacks
- CDM: What to do before your child turns 18
- Unaffected caregivers
Entertainment and Connection
MDF understands the importance of community and connection. We aim to create unique opportunities in safe and welcoming environments for attendees to connect and engage with each other. This could include a variety of activities:
- Networking buddy lunch
- Dance party
- Networking and social hour
Dining & Dietary Needs
During Conference Registration, you will be asked about your plans to attend certain meals to help MDF and the caterer tailor meals to any dietary requirements and anticipate how much food to prepare. All in-person registrations include the following meals:
- Saturday Breakfast.
- Saturday Lunch.
- Saturday Closing Dinner & Dance Party.
- Some break time snacks & coffee/tea are also included.
Transportation
Attendees traveling by plane will arrive at one of the following airports:
- Los Angeles International Airport (12 miles from UCLA)
Visitors seeking transportation to the Los Angeles, California - 2024 MDF Regional Conference have a variety of options, including taxi service, ride-sharing apps, and public transportation. Please note that attendees are responsible for arranging all of their own ground transportation to and from the airport and throughout the duration of the conference.
Scholarships
Join the waitlist for an MDF Regional Conference Scholarship! All Scholarships to our Regional Conference in Los Angeles, California, have been awarded. If you are still interested in a Scholarship, please apply to join the waitlist in case someone is no longer able to accept their scholarship or additional scholarship funding becomes available. Click here to apply for the Conference Scholarship Waitlist!
What are MDF Conference Scholarships? MDF Scholarships can award up to $750 in reimbursement and can cover: travel (including airfare, rental car, or mileage reimbursement), lodging, parking, local transportation (including Taxi & Rideshare), and travel day meals. Priority will be given to applications for first-time in-person attendees. Download the full MDF Scholarship policy to learn more about allowable expenses.
Apply for the Conference Scholarship Waitlist!
If you are waiting for a response or have questions about MDF Scholarships, please contact MDF’s Community Education Manager, Emily Romney, at emily.romney@myotonic.org.
Childcare
Due to low demand, Childcare services will not be provided at the 2024 MDF Regional Conferences. Please make all necessary arrangements prior to arrival so that you can take full advantage of all the Conference has to offer.
Registration Cancellation Policy
We understand that circumstances can change. MDF appreciates advanced notice of cancellations to reduce food waste and event costs. Donations to MDF are non-refundable.
Hotel room cancellations must be made directly with the hotel.
Platinum Sponsor
Gold Sponsor
Silver Sponsors
Bronze Sponsor
Supporting Sponsor
Questions?
Reach out to MDF by emailing info@myotonic.org or calling 415-800-7777.