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2016 Annual Connect Conference

Resource Provider Opportunities

Parent Project Muscular Dystrophy’s Annual Connect Conference is a unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne and their families. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy meeting.

This year, 2016, marks our 22nd Connect Conference. With the Duchenne landscape changing in so many ways just in the last six months alone, this year’s meeting is more important than ever and will help the community build partnerships, understand the nuances of Duchenne, open communication channels, and lay the groundwork for future collaborations.

PPMD's Annual Connect Conference shapes our understanding of the Duchenne landscape and brings us closer to the day we end Duchenne.

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PPMD will be live streaming sessions most sessions from the conference Sunday, June 26 - Tuesday, June 28.

View the Agenda for session details. All sessions times are EDT. Our tentative streaming schedule is:

  • Sunday, June 26: 1:00 PM - 6:30 PM
  • Monday, June 27: 9:15 AM - 12:30 PM EDT; 2:15 PM - 6:30 PM EDT
  • Tuesday, June 28: 12:45 PM - 2:00 PM; 3:35 PM - 6:15 PM EDT

Click here to access the live stream.


  • When: Sunday, June 26 - Wednesday, June 29, 2016
    (Pre-Conference begins on Saturday, June 25)
  • Where: Orlando, FL at the Renaissance Orlando at Sea World
    • Room Rate: $179 /night (single and double)
    • Room Reservation Deadline: June 5
    • See "Room Reservations" section at bottom of page for more info
  • Early Registration Deadline: April 15
  • General Registration Deadline: May 15
  • Late/Final Registration Deadline: June 17


We are so proud of the comprehensive agenda that we have put together, featuring more updates in research, care, and advocacy than ever before.

We have listened to your feedback and included topics that are the most important to your day-to-day life with Duchenne. Plus, we will offer educational and social activities for teens and adults living with Duchenne. We welcome the return of our ever-growing Kids Track, featuring more great experiences while parents attend the regular conference sessions. Add in our inaugural End Duchenne .1K and a Connect 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 today!

View Agenda

*Please note the agenda is a work in progress and with speakers & times subject to change.

Snapshot of Conference Topics/Schedule

We hope you will join us in Orlando, FL where you will hear current and critical information on:

  • Managing care at every age of Duchenne — what you need to know now and in the future
  • Understanding Duchenne mutations and disease course
  • Duchenne clinical trials, both ongoing and upcoming — advancements, timelines, and access
  • Ways to measure the effects of potential therapies
  • Duchenne research in the preclinicalstage — where it is heading, what are next steps
  • Advocacy work in the Duchenne space — how this impacts research and treatments
  • Encouraging independence and life lessons

Please note that this year's conference dates are different than years past. We will be starting our first General Session on Sunday, 6/26 and the conference will continue through until midday Wednesday, 6/29.


Conference Registration

2015 Connect Conference

Guest Type Early
March 1
- April 15
April 16
- May 15
May 16
- June 17
Family Members
(Parents, Patients, Caregivers, etc)
$300            $325            $350           
Medical Professionals
(MD, PhD, PT, NP, etc)
$325 $350 $375
Conference Sponsor Representatives
(Sponsoring Industry Representatives)
$475 $525 $550
General Public
(Non-Sponsoring Industry Representatives, Investors, etc)
$600 $650 $675
Newly Diagnosed
Through generous donations and sponsorships, PPMD is offering a scholarship program to waive registration fees for families who have been diagnosed after January 2015.** Please click here to apply for this scholarship.


Register Now

**PPMD can offer Newly Diagnosed 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.

What does your Connect Conference Registration Cover? 

Registration fees help to offset, but do not cover the full cost of the Connect Conference. PPMD recognizes, however, that bringing the conference and the wealth of information it provides is an invaluable part of our leadership in the Duchenne community.

Included with your registration fee is:

  • Access to all General and Breakout sessions, the Vendor Resource Fair and Scientific Poster sessions.
  • Lunch and a welcome reception on Sunday, breakfast and lunch on Monday and breakfast, lunch and dinner on Tuesday.
  • Upon check in you will also receive conference materials and information including a printed conference guide that compiles the latest information on all current Duchenne clinical trials, and other valuable Duchenne information.  


Newly Diagnosed Program

2015 Connect Conference

This year, PPMD will again be offering an amazing support program for newly diagnosed Duchenne families to attend the Connect Conference. Through generous donations and sponsorships, PPMD will waive registration fees for families who have been diagnosed after January 2015.**

If your child has been diagnosed with Duchenne/Becker after January 2015 and you have never attended a PPMD Connect Conference and would like to attend the conference to gain a better understanding of Duchenne care and research, and to meet other families living with this diagnosis, please click here to apply for this scholarship.

(**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 End Duchenne .1K  are not included in this sponsorship.)


Teens and Adults living with Duchenne

PPMD's Annual Connect Conference

PPMD is excited to expand the teen and adult programming at our Annual Connect Conference! Starting with a poolside social on Saturday evening, June 25 and including a full morning of sessions on Sunday, June 26, teens and adults (14 years & older) with Duchenne will have an opportunity to really dive into the social, emotional, and financial topics that are most important to them. Make sure you (or your teen/adult child with Duchenne) are registered for this year’s Annual Connect Conference and take advantage of these great new sessions.


Add-On Opportunities

(see descriptions below)

Type Early
March 1
- April 15
April 16
- May 15
May 16
- June 17
End Duchenne .1K - Adults
(includes a race t-shirt, bib, & swag bag)
$15 $15 $15
End Duchenne .1K - Kids (Ages 5 & up)
(includes a race t-shirt & bib)
Kids under age 5 are free
$5 $5 $5
Kids Track
(includes a t-shirt)
Minimum age is 5 or Kindergarten
$70           $75            $80           

(see descriptions below)

End Duchenne .1K™ 

 .1K Run to End Duchenne

This year PPMD will host the inaugural Connect Conference End Duchenne .1K™. Join us for this fun and zany race as parents, families, kids of all ages, scientist and researchers, industry sponsors, and ANYONE and EVERYONE take to the streets of Orlando and together tackle .1K (about the length of a football field!). Your registration includes a race shirt, bib, swag bag and all the fun of racing. You won’t want to miss this fun and exciting event. A great way to start the day – raising awareness and having a great time doing it!

Registration is $15 per adult and $5 per child (kids under 5 are free).


Register Now

Kids Track

Kids Track

One of our most exciting and fast-growing programs at the Connect Conference is our Kids Track! This year, we will be expanding our Kids Track to give those attending more creative outlets to express themselves.

This year, the program will include:

  • A two hour session on Sunday, June 26th
  • A three hour session and lunch the morning of Monday, June 27th
  • A two hour session the afternoon of Monday, June 27th
  • A three hour session the morning of Tuesday, June 28th

During these sessions there will be entertainment, special group games, crafts and activities (broken into 3 age groups; minimum age is 5 or kindergarten), and loads of interactive fun.

Kids Track registration also includes a free t-shirt, lunch on Monday, and dinner Tuesday night.

NOTE: Minimum age is 5 or kindergarten. 

Register Now


Room Reservations

To reserve a room at the Renaissance Orlando at Sea World at the Parent Project Muscular Dystrophy group rate, please make your reservation by June 5, 2016.

  • Make Your Room Reservation:
    • Online
    • Toll Free: 1-800-266-9432
    • Local number: 1-407-351-5555
      If calling, make sure to identify yourself as part of the 'PPMD Annual Connect Conference 2016'
  • Room Rate: $179 /night
  • Room Reservation Deadline: June 5


  • Can we bring our children to PPMD’s Annual Conference? 
  • Does PPMD provide childcare?
  • Does PPMD ever waive registration fees?

Past Conference Presentations


Corporate Sponsorship Opportunities

Interested in sponsoring the Connect Conference? Sponsorship opportunities are still available. Please visit our Sponsor Programs page for more details.


Resource Fair Opportunities

We are pleased to announce the return of the PPMD Resource Fair at this year’s Annual Connect Conference. We are working to help resource providers and the community connect about practical services, equipment, and more. Admission for attendees is included in conference registration. If you would like information about how to exhibit please visit

Our Sponsors











Bamboo Therapeutics




Capricor Therapeutics




Wave Lie Sciences

Our Exhibitors


Acorn Stairlifts


 Bayada Pediatrics Cascade DAFO

 Ki Mobility Millennium Respiratory Services

Stealth Products

Robotics & Technology

 Kinova Nationwide Childrens

 Talem NJIT

UC Davis

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