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 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.
**If you'd rather register via mail or fax, please download the offline registration form.
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.
In 2013 PPMD’s Annual Connect Conference will focus on Duchenne: Better, Faster, Now!
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
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:
- Teens & Adults living with Duchenne
- 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)
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.
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
- 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
- Technology that will help us better
navigate through research, clinical trials and every aspect of Duchenne
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
- 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.
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!
- Corporate Sponsorship
- CME Credits
Q: Can we bring our children to PPMD’s Annual Conference?
A: Yes, you are welcome to bring your children to PPMD’s Annual Connect Conference. However, please remember and keep in mind that the conference presentations are serious topics and quite sensitive and session days are long. For this reason, please make sure to bring someone with you or make arrangements to have someone watch your children while you attend the conference sessions. Also, PPMD will be offering a Kids Track on Friday, June 29. (View the "Kids Track" section of this page to learn more)
Q: Does PPMD provide childcare
A: No. PPMD does not offer childcare at this meeting. However PPMD is able to provide you with a list of children’s activities and attractions in the area.
Q: When does registration close?
A: Conference Registration closes on June 4, but other deadlines are sooner. To receive the hotel discount you must book your room prior to June 4. And to receive the Early Bird Registration discount you must register for the conference prior to May 21.
Q: Does PPMD ever waive registration fees?
A: Unfortunately, PPMD is not in the position to be able to waive any registration fees. As mentioned above, the registration fees only cover approximately 65% of what PPMD pays for each person for the conference. We suggest that you look into local community groups such as the Lion's Club or Rotary Club for financial assistance. Also sometimes, church groups or other service groups will help provide assistance.
Thank you to our 2013 Connect Conference Sponsors:
Additional thank you to our non-CME sessions 2013 Connect Conference Sponsors:
Interested in sponsoring the Connect Series? Sponsorship opportunities are still available. Please visit our Sponsor Programs page for more details.
Past Conference Presentations
Our family-centered approach is at the heart of everything we do. Learn more.