by: Parent Project Muscular Dystrophy
As mentioned in yesterday’s update, we know that the coronavirus (COVID-19) is dominating every headline and day-to-day activities nationally. PPMD is continuing to monitor the situation and consult with our Certified Duchenne Care Centers network of experts. For now, we are moving forward with plans to provide you with a safe and informative Annual Conference experience in Scottsdale, Arizona this summer.
PPMD’s 2020 Annual Conference Details:
- When: Thursday, June 25 – Saturday evening, June 27, 2020
- Where: The Phoenician in Scottsdale, AZ
The 2020 PPMD Annual Conference marks our 26th Annual Conference. No other Duchenne conference comes close to the experience that the PPMD Annual Conference is. Families, physicians, researchers, caregivers, industry partners and those living with Duchenne gather to discuss all topics Duchenne. We gather to connect, to share information, and to discuss and debate the opportunities for Duchenne treatments.
This conference is like no other. Here the key is community. All pieces of this incredible community come together to learn, to listen and to look forward at driving change. Every single voice is important, and every moment is rich. Now is the time for us to come together as a community, and seize this moment.
The field is ripe with opportunity and at the PPMD Annual Conference partnerships are built, questions are asked and answered, and friendships are forged.
Register by April 15 to take advantage of our Early Bird registration rate!
PPMD’s Annual Conference & the Coronavirus
At this time, we are hopeful that the coronavirus will be contained by this year’s conference at the end of June, but we will keep you updated on any changes to our plans. We recommend that you register for the Conference and explore booking your travel needs to ensure your space is reserved. If the situation changes, all PPMD registration fees will be fully refundable. Hotel reservations within the PPMD hotel room blocks can be cancelled up to 7 days prior to the arrival date to receive a refund of the deposit. Many airlines are also offering deals for newly booked flights, where changes or cancellations can be made within a specific timeline (please look at each airline policy closely to see what applies for you).
Topics
This year in Scottsdale, AZ you will hear current and critical information on:
- Managing all aspects of care in Duchenne
- Understanding Duchenne mutations and disease course
- Duchenne clinical trials, both ongoing and upcoming, the advancements and the timelines
- Gene Therapy and where this research is heading
- Accessing therapies and the future of treatments
- Impacting research, trials, and treatment through advocacy and collaboration
- Encouraging independence and social integration
- Parent to parent real life information — managing your family
- Managing Behavior issues and anxiety in Duchenne
- Living with Duchenne — those living with Duchenne spend time with and learn from our PPMD Adult Advisory Committee about everyday life
PPMD’s 2020 Annual Conference will have more small and topic-specific breakout sessions and of course one-on-one private sessions, a part of last year’s Annual Conference that was highly acclaimed and requested again.
Newly Diagnosed Program
PPMD will again be offering a support program for newly diagnosed Duchenne families to attend the Annual Conference. If your child has been diagnosed with Duchenne after January 2018 and you have never attended a PPMD Annual Conference, this is your opportunity. Gain a better understanding of Duchenne care and research, and meet other families living with this diagnosis. Please apply for this scholarship to waive your conference registration fees.*
*PPMD can offer conference scholarships to approximately 30 families on a first come, first serve basis. This scholarship covers conference fees only and does not cover travel or hotel accommodations. Kids Track is not included in this sponsorship.
Teens & Adults Track
This programming is for participants with Duchenne or Becker muscular dystrophy, ages 14 and up only.
PPMD formally introduced specific programing for Teens and Adults living with Duchenne at the 2016 Annual Conference. Since then, the desire for more of this programing to include social events as well as closed-door care and life management sessions has helped to drive a robust Teens & Adults Track at the meeting.
Kids Track
This programming is for all children ages 5-13.
PPMD’s Annual Conference is a busy 3-day meeting, which can be hard for little ones to handle. One way PPMD tries to help is to provide a few hours each day of Kids Track programing so that parents can have a small break. While Kids Track is not an all-day child care service, it is a nice way for the children to meet each other, interact, and have some fun!
Duchenne Family Assistance Program Conference Hotel & Travel Scholarship
PPMD is once again partnering with the Duchenne Family Assistance Program to help cover cost for families who have financial barriers to attending the PPMD Annual Conference. Duchenne Family Assistance Program covers hotel and flight for families in need and PPMD waives the cost of registration. For more information, please contact dorene@teamjoseph.org to learn more about the program.
Register Today!
PPMD’s Annual Conference prides itself on bringing together the most important thought leaders in the Duchenne space. But just as importantly, we hope you will find this conference as a chance to really connect with this passionate and supportive community – a community few of us chose to be a part of, but none of us can live without.
We can’t wait to see you and your family in Scottsdale, Arizona!
