PPMD's 2013 Annual Connect Conference - Duchenne: Better, Faster, Now!

Hello Duchenne community!

Summer is just around the corner and with that comes sunshine, fireflies and PPMD’s Annual Connect Conference.

We are excited to be back in Baltimore, MD at the beautiful Marriott Waterfront this year and really excited about this year’s program.

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



BETTER

Thursday, June 27th 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. Join us as we discuss problems and practical solutions to talking with babysitters, parents at playdates, nosey people, conversations in the grocery store line, adaptive PE, and higher education hurdles. This panel discussion will help everyone listen and learn from each other, helping to make life better as you navigate Duchenne.

 


FASTER

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, we will offer you the opportunity to escape for a bit, or if you want you can join lunchtime discussion groups such as:

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


These informal lunch gatherings are a great way to meet new families and learn from each other’s experiences.

In the afternoon, we will be joined by this year’s Keynote speaker, Evelyn Resh, who will tackle the topic of intimacy and the human touch – two things often sacrificed when families are dealing with a catastrophic diagnosis.

Later in the afternoon we will keep up the theme of FASTER and take attendees 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.

After that panel we will continue our talks related to FASTER by diving into the ever changing and critically important topic of Advocacy. We are grateful and excited to have top officials from the FDA joining us to discuss the FDA’s commitment to the Duchenne community. We will also be sharing information garnered from PPMD’s Risk Tolerance Survey, sharing the first Duchenne-specific White Paper on FDA policy – Putting Patients First, and then welcoming additional speakers from both the FDA and the Department of Defense (DOD).

 

NOW

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. Through their postings, the Jones’ family brought much awareness, understanding, and compassion to Duchenne. We are extremely thankful to have Chris and Natalie at this year’s conference, and are looking forward to hearing them speak as they open up our session on NOW.

Saturday’s NOW sessions will open with an intense and incredibly timely cardiac panel: Caring for the Heart in Duchenne. This panel is made up of top cardiac experts from around the country and will tackle all topics cardiac.

After that we will address other critical hot topics such as: What to Know in an Emergency and The Trouble with Oxygen.

And then we will begin our decent into one of today’s most current topics: Clinical Trials.

We will hear about Eligibility for Clinical Trials. We will learn about how clinical trials are developed and then we will hear about technology that will help us better navigate through research, clinical trials and every aspect of Duchenne.

After lunch on Saturday we will then hear from almost a dozen of the industry leaders and partners working in the Duchenne space. We will learn updates on current and upcoming trials, we will better understand timelines, and hear exclusive updates on trial progression.

Lastly, 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.

So that is it in a nutshell.

I am tired already just thinking about how much will be packed into these few days! One thing I can guarantee however is that there is not another conference in the world like this one. While it is so critical to learn every bit of information, it is also about the community coming together in a place of equal ground. No need for explanations. Just a place where you are among friends who know exactly what you are experiencing in your life.

We hope you join us this year.






Kimberly Galberaith, COO
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