Family Gathering Agenda and Mobile App

Family Gathering Agenda and Mobile App

We are excited to share the draft agenda for the Family Gathering this July! Here it is below for your reference! We also are rolling out a mobile App so you can keep up to date with the latest information about the event, give us feedback and suggestions to help make this event the best it can be, and make more connections before you make it to Boston! Go to http://my.yapp.us/YKMDY7 to download the YAPP. We look forward to seeing many families in Boston this July! 

Please Register HERE if you have not done so yet

2017 Family Gathering Agenda

 

Day 1 – Wednesday, July 19th

8AM- 6PM Arrival

  • Families arrive and complete hotel registration

6PM – 8PM Reception

  • Informal cocktail reception

 

Day 2 – Thursday, July 20th

8AM- 12PM Morning Session: Clinics

  • 8AM- 9AM Breakfast, Registration, Family Networking, Child Care Check-In
  • 9-9:15 AM Welcome Address– Jeff Wuchich- Cure AHC President
  • 9:15-9:45 AM Duke AHC Clinic Overview– Mohamad Mikati, MD Duke Children’s Hospital, Duke School of Medicine
  • 9:45-10:15 AM Harvard AHC Clinic Overview-Kathryn Svoboda, MD Harvard University
  • 10:15-10:30 AM Break
  • 10:30 -11:00AM Vanderbilt AHC Clinic– Kevin Ess, MD Vanderbilt University
  • 11-11:30 AM Wake Forest University MRI Study– Member of Allison Brashear. MD’s team
  • 11:30AM -12PM IAHCRC Natural History Study– Mohamad Mikati- Duke Children’s Hospital, Duke School of Medicine

12PM- 2PM Lunch

2PM – 5PM Afternoon Session: Interaction with AHC Doctors

  • Register for Clinics
  • Meet AHC Doctors (Note: we will coordinate appointments ahead of time. Some of these will be consultations via Skype/FaceTime).

5:30PM -7:30PM Dinner

  • Keynote SpeakerEngaging Government Officials – Tony Pena, Cure AHC Vice President

 

Day 3 – Friday, July 21st

7:30AM:- 12:30PM Morning Session: Research Update

  • 7:30AM- 8:30AM Breakfast, Family Networking, Child Care Check-In
  • 8:30AM- 8:35AM Welcome, Announcements- Jeff Wuchich, Cure AHC President
  • 8:35AM- 9:30AM Duke University D801N & E815K Mouse Model Updates- Mohamad Mikati, MD, Duke Children’s Hospital, Duke School of Medicine
  • 9:30AM-10:15AM Columbia University Optogentics Study Update-Erin Heinzen, PhD, Columbia University.
  • 10:15AM-10:30AM Break
  • 10:30AM-11AM ATP1A2 clinical spectrum– Coral Stredny MD, Boston Children’s Hospital, Harvard Medical School
  • 11AM-11:45AM Vanderbilt/Northwestern Research Update– Kevin Ess, MD/Al George, MD, Northwestern University/
  • 11:45AM-12:30PM Duke university Additional AHC Research Projects -Mohamad Mikati, MD, Duke Children’s Hospital, Duke School of Medicine

12:30PM- 2PM Lunch

2PM – 5:15PM Afternoon Session: Improving Quality of Life

  • 2PM-2:45PM Behavioral Management Issues in AHC-Bill Krenn, MSW, Cure AHC Board Member & AHC Parent
  • 2:45PM-3:30PM ABA Therapy -An Integrative Educational & Behavioral Approach – Speaker TBA
  • 3:30PM-3:45PM Break
  • 3:45PM-4:30 PM Guidelines for Treatment of AHC– Mohamad Mikati, MD Duke Children’s Hospital, Duke School of Medicine
  • 4:30- 5:15 NORD Patient Assistance Programs TBA

6:00PM -7:30PM Dinner

  • Keynote Speaker – Dr. Phillip Pearl -Cure AHC Medial Advisory Board, Harvard University

 

Day 4 – Saturday, July 22nd

8AM:- 12PM Morning Session: Answering your Questions, Getting Involved, and Next Steps

  • 8AM- 9AM Breakfast, Family Networking, Child Care Check-In
  • 9AM- 10:30 AM Parent Interactive Session- Sharing Ideas, asking questions- All Attendees, Moderated by Stacie Confair-Stringer, Cure AHC Family Support Chair and Mohamad Mikati, MD, Duke Children’s Hospital, Duke School of Medicine
  • 10:30AM-10:45AM Break
  • 10:45AM-11:30 Fundraising is Easier than you Think -Haley Gray, MBA, Cure AHC Board Member
  • 11:30AM- 12:00 PM Cure AHC Strategic Plan and Closing Remarks – Jeff Wuchich, Cure AHC President

12PM Conference Ends

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