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Annual Connect Conference

Annual Connect Conference

The largest, most comprehensive annual, international conference focused entirely on Duchenne.

2013 Annual Connect Conference

  • When: June 27 - 30, 2013
  • Where: Baltimore, MD at the Baltimore Marriott Waterfront
  • Early Bird Registration Deadline: May 28
  • Final Registration Deadline: June 3 – Extended until June 12!

Conference Registration

  • Conference Registration Fee:
    • Before May 28: $300/person
    • After May 28: $325/person
    • Deadline: June 3 – Extended until June 12!
    Registration fee includes: Welcome Reception Thursday evening; breakfast on Friday and Saturday; lunch on Thursday, Friday, and Saturday; dinner Saturday evening; and all conference materials. 

  • Kid’s Track (Friday, June 29 from 9:30 am – 1:00 pm)
    • Before May 28: $45/child
    • After May 28: $65/child

    Kids Track will be on Friday, June 29 from 9:30 a.m. 1:00 p.m. This is a great time for all of the kids to gather, play games, do crafts, interact with each other, and form friendships. Kids Track will be divided into three groups this year: Ages 5-8, 9-12, and 13 & up. Qualified adult supervision is provided, as is lunch.

Register Now

**If you'd rather register via mail or fax, please download the offline registration form.

Room Reservations

To reserve a room at the Baltimore Marriott Waterfront at the Parent Project Muscular Dystrophy group rate, please make your reservation by June 3, 2013.

  • Make Your Room Reservation: Make your reservation online
  • Room Rate: $179 /night
  • Room Reservation Deadline: June 3 – Extended until June 12!


Agenda

In 2013 PPMD’s Annual Connect Conference will focus on Duchenne: Better, Faster, Now!

View Agenda

BETTER (Thursday)

Annual Connect Conference

Thursday, June 27 will begin at 12:00 noon and will cover topics related to making life BETTER. These topics will include:

  • The five critical areas of Duchenne care
  • Other critical care related topics you should know about
  • Encouraging independence
  • Family interactions
  • Navigating Medicaid and insurance
  • Adaptive technologies
  • Marriage and relationships
  • Behavior Issues
  • Home remodeling

We will also have the first ever Living Duchenne: Life lessons for every age and stage panel which will discuss life lessons for every age and stage of Duchenne, including problems and practical solutions to:

  • talking with babysitters
  • parents at playdates
  • nosey people
  • conversations in the grocery store line
  • adaptive PE
  • higher education hurdles


FASTER (Friday)

Annual Connect Conference

On Friday our discussions will lean toward what can we do and what is happening to move things FASTER. Topics will include:

  • PPMD’s research investments
  • Beyond 51: Addressing rare mutations
  • Natural history
  • MRI as a biomarker
  • The RADD project
  • The NCATS: Robotics in Duchenne project
  • Other research specific talks 

When we break for lunch on Friday, you can meet new families and learn from each other’s experiences by joining lunchtime discussion groups such as:

  • Grandparents
  • Dad
  • Moms
  • Teens & Adults living with Duchenne

After Lunch:

  • Keynote speaker, Evelyn Resh, will tackle the topic of intimacy and the human touch – two things often sacrificed when families are dealing with a catastrophic diagnosis.
  • You will be taken behind the scenes as we host a mock TACT Review meeting. This review panel will demonstrate how a drug is presented in a review situation, what questions are asked, what rigor is applied, and help to answer questions regarding the importance of review. 
  • Top officials from the FDA will join us to discuss the FDA’s commitment to the Duchenne community.
  • We will share information garnered from PPMD’s Risk Tolerance Survey, and the first Duchenne-specific White Paper on FDA policy – Putting Patients First.
  • Additional speakers from both the FDA and the Department of Defense (DOD) will present.


NOW (Saturday and Sunday)

Annual Connect Conference

Saturday will start off early with a special presentation and discussion from Mitchell Jones’ father, Chris Jones. Chris and his wife, Natalie, beautifully and heroically documented their son Mitchell’s passing earlier this year in a series called Mitchell’s Journey.

Saturday’s NOW sessions will address critical hot topics such as:

  • Caring for the Heart in Duchene (This panel is made up of top cardiac experts from around the country and will tackle all topics cardiac)
  • What to Know in an Emergency
  • The Trouble with Oxygen

Then we will begin sessions on one of today’s most current topics, Clinical Trials, where ee will hear about:

  • Eligibility for clinical trials
  • How clinical trials are developed
  • Technology that will help us better navigate through research, clinical trials and every aspect of Duchenne

After lunch we will then hear from almost a dozen of the industry leaders and partners working in the Duchenne space. Highlights include:

  • updates on current and upcoming trials
  • timelines
  • exclusive updates on trial progression

On Sunday we will again present the hands on Physical Therapy sessions that remain one of the most attended and appreciated conference sessions. Here, Duchenne experts will not only discuss the importance and benefits of proper physical therapy, they will also guide you with hands on experience in how to stretch your child, no matter what age. 

Register Now

Things to Do in Baltimore

  • Receive discounts and coupons to some of Baltimore’s best restaurants, shopping, and attractions. Click here and start saving!

  • Yankees vs. Orioles
    While PPMD is in Baltimore for the Connect Conference, the NY Yankees will play the Baltimore Orioles, June 28, 29 & 30! Buy tickets now if you are interested in attending Friday or Sunday (Saturday is the PPMD Dinner!). Note, students can get $6 tickets in the upper level for Friday, 6/28, subject to availability. Find out more!

More Information

  • Corporate Sponsorship
  • CME Credits 
  • FAQs 

Sponsors

Thank you to our 2013 Connect Conference Sponsors:

BCUCatabasisHaloMastersPTCSareptaShtank OutTivorsan

Additional thank you to our non-CME sessions 2013 Connect Conference Sponsors:

LillyPfizer

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

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