by: Parent Project Muscular Dystrophy
PPMD is excited to unveil the agenda for our 2019 Annual Conference in Orlando, Florida, June 26 – June 30, 2019! Each year, PPMD works hard to put together a comprehensive agenda featuring updates in research, care, and advocacy, as well as topics you have told us are a priority to you and your family.
This year, we are excited to add an interactive Town Hall Forum in which all presenters, attendees, clinicians, industry partners, children, teens, and adults living with Duchenne – really everyone present – are invited to discuss what matters most to them in the world of Duchenne. Your voice drives innovation and advancement. Come be part of shaping the future of Duchenne at this interactive and powerful session!
PPMD is also excited to offer a variety of educational and social activities for teens and adults living with Duchenne. And we welcome the return of our ever-growing Kids Track, featuring more great experiences while parents attend the regular conference sessions. Add in our Welcome Reception and Saturday Night Celebration, and you have an unforgettable experience that you will remember for a lifetime!
Check out this year’s agenda* and make sure you register you and your family before the discounted general registration rate ends May 24th!
View the agenda > Register now >*Please note the agenda is a work in progress and with speakers & times subject to change.
Topics
This year in Orlando, FL you will hear current and critical information on:
- Managing care at every age of Duchenne — what aspects of care you need to know now and in the future
- 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 in Duchenne
- Living with Duchenne — those living with Duchenne spend time with and learn from our PPMD Adult Advisory Committee about everyday life
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 2017 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 and the Teens/Adults Track are 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 & Sib Shop
This programming is for all children ages 5-14.
One of our most exciting and fast-growing programs at the Annual Conference is our Kids Track! During these sessions there will be entertainment, special group games, crafts and activities (broken into 3 age groups; minimum age is 5), and loads of interactive fun.
As a program of the Kids Track, PPMD will offer a Sib Shop for those children who are siblings to people with Duchenne. This breakout for the siblings has become a successful element of PPMD’s educational events and is a safe place for siblings to be together, talk, and really open up on topics that they face.
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 Orlando, Florida!
Register Now to get the Early Bird Rate
