2017 Global Learning Conference Schedule

Schedule subject to change. Updated August 30, 2017. Sessions marked with an asterisk * are recommended for CME attendees.

Thursday, September 7, 2017

10:00 am – 1:00 pm

  • Physician Consultations
  • Registration Open

2:00 – 3:00 pm

  • Prof. Rodney Grahame: An Old-timer’s View of the New EDS Criteria*

3:15 – 4:00 pm

  • Dr. Leslie Russek: Developing a Self-Management Plan for hEDS*
  • Dr. Alan Pocinki: Evaluation and Management of Autonomic Dysfunction in EDS*
  • Dr. Clair Francomano: Rare Types of EDS*
  • Dr. Pradeep Chopra: Chronic Pain in Ehlers-Danlos Syndromes*

4:15 – 5:00 pm

  • Dr. Alan Pocinki: Evaluation and Management of Fatigue In EDS*
  • Ann Rodiger & Carol Boggs: Postural Solutions for Instability: The Alexander Technique and EDS*
  • Dr. Anne Maitland: Mast Cell*
  • Dr. Pradeep Chopra: Chronic Pain in Ehlers-Danlos Syndromes*

5:00 – 6:30 pm • Welcome Reception

5:30 – 7:00 pm • Speakers Reception

6:00 – 7:00 pm

  • Maggie Buckley: Discussion Group, Newly Diagnosed
  • Shani Weber: Start an EDS Support Group + Raise EDS Awareness = Friends and Doctors Who “Get It”
  • Tom Query: Discussion Group, Caregivers

Friday, September 8, 2017

8:30 – 8:45 am

  • Sandy Aiken Chack & Lara Bloom: Welcome

8:45 – 10:45 am

Hypermobile Plenary Session*

  • 8:45 – 9:15 am — Dr. Howard Levy: hEDS in Adults
  • 9:15 – 9:45 am — Dr. Tony Kline: Hypermobility in Children
  • 9:45 – 10:15 am — Dr. Clair Francomano: Hypermobility Spectrum Disorders
  • 10:15 – 10:45 am — Question and Answer period with Drs. Levy, Kline, and Francomano

10:45 – 11:15 am • Break

11:15 am – 12 noon

  • Dr. Alan Pocinki: Evaluation and Management of Fatigue In EDS*
  • Ann Rodiger & Carol Boggs: Postural Solutions for Instability: The Alexander Technique and EDS*
  • Dr. Anne Maitland: Mast Cell*
  • Dr. Patrick Agnew: Foot and Ankle Updates*

12:15 – 1:00 pm

  • Dr. Antonio Bulbena: Progress in the Psychiatric and Psychological Dimensions of EDS: “It is not just in your mind”*
  • Ellen Lenox Smith: Ehlers-Danlos Syndrome and Medical Cannabis* – cancelled due to illness
  • Dr. Peter Byers: Diagnosis, Assessment, Treatment and Care Plans for Children With Vascular EDS*
  • Jeannie Di Bon: Strengthen and Control Your Hypermobile Core With Pilates*

1:00 – 2:15 pm • Lunch

  • Jason Parry: Pacing*

2:15 – 3:00 pm

  • Dr. John Mitakides: TMJ and Craniocervical Instability in Chiari, Hypermobile, and EDS Patients*
  • Ellen Lenox Smith: Ehlers-Danlos Syndrome and Medical Cannabis* – cancelled due to illness
  • Linda Neumann-Potash: Discussing Pain: How to help your health care provider help you?
  • Dr. Clair Francomano: Classical EDS*

3:15 – 4:00 pm

  • Dr. Leslie Russek: Developing a Self-Management Plan for hEDS*
  • Dr. Alan Pocinki: Evaluation and Management of Autonomic Dysfunction in EDS*
  • Dr. Clair Francomano: Rarer Types of EDS*
  • Dr. Patrick Agnew: Foot and Ankle Updates*

4:15 – 5:00 pm

  • Dr. Heidi Collins: Diet and Supplements*
  • Dr. John Mitakides: TMJ and Craniocervical Instability in Chiari, Hypermobile, and EDS Patients*
  • Linda Neumann-Potash: Discussing Pain: How to help your health care provider help you?
  • Dr. Clair Francomano: Classical EDS*

7:00 pm • Zebra Ball

  • Christina Bloom, singing the EDS anthem “It’s Our Time” as well as other songs
  • Victoria Graham, performing her dramatic monolog about living with invisible illness
  • Dinner, cash bar, and surprises!

Saturday, September 9, 2017

8:30 – 8:45 am

  • Sandy Aiken Chack & Lara Bloom: Welcome

9:00 – 9:45 am

Plenary Session

  • Dr. Adam Farmer: Gastrointestinal Manifestations of Hypermobile Ehlers-Danlos Syndrome and the Hypermobility Spectrum Disorders*

10:00 – 10:45 am

  • Dr. Cathy Raggio: Orthopedics*
  • Dr. Anthonio Bulbena: Progress in the Psychiatric and Psychological Dimensions of EDS: “It is not just in your mind”*
  • Dr. Peter Byers: Diagnosis, Assessment, Treatment and Care Plans for Children With Vascular EDS*
  • Jeannie Di Bon: Strengthen and Control Your Hypermobile Core With Pilates*

10:45 – 11:15 am • Break

11:15 am – 12 noon

  • Dr. Cathy Raggio: Orthopedics*
  • Dr. Peter Byers: Adults With Vascular EDS*
  • Dr. Clair Francomano: Assessment of Classical EDS in Children*
  • Dr. Heidi Collins: Diet and Supplements*

12:15 – 1:00 pm

Plenary Session

  • Dr. Fraser Henderson: The Differential Diagnosis of Headaches in EDS*

1:00 – 2:15 pm • Lunch

  • Jason Parry: Managing Dislocations and Subluxations*

2:15 – 3:00 pm

  • Jon Rodis: Disability*
  • Linda Neumann-Potash: Grief Support/Memorial Service
  • CME Wrap-Up: for CME participants only (and required for them)*

2:15 – 3:30 pm

  • Shani Weber: Create More Effective Doctor Appointments: More than 100 tips you can start using today!

Junior Zebras

Thursday, September 7, 2017

2:00 – 3:00 pm

  • Victoria Graham: Keynote/Icebreaker Activity

3:15 – 4:00 pm

  • Dr. Howard Levy:Q&A with a geneticist

4:15 – 5:00 pm

  • Dr. Antonio Bulbenna: Coping Strategies for EDS Kids

5:00 – 6:00 pm

  • Welcome Reception

6:00 – 7:00 pm

  • Supervised free time

Friday, September 8, 2017

8:30 – 8:45 am

  • Morning Welcome

8:45 – 10:30 am

  • Brianna Greenspan: Creative writing workshop

10:45 – 11:15 am

  • Break with parents

11:15 am – 12 noon

  • Barby Halstead-Worrell: How to Talk with Your Doctor

12:15 – 1:00 pm

  • Dr. Heidi Collins: Nutrition and EDS

1:00 – 2:15 pm

  • Lunch with parents

2:15 – 5:00 pm

  • Christina Bloom: Songwriting workshop

Saturday, September 9, 2017

8:30 – 8:45 am

  • Morning Welcome

8:45 – 9:45 am

  • Barby Halstead-Worrell: Discussion Group–What do you want to talk about?

10:00 – 10:45 am

  • Dr. Leslie Russek: Creating a Plan for Managing hEDS in Children and Adolescents (parents invited)

10:45 – 11:45 am

  • Break with parents

11:15 am– 12 noon

  • Jessica Adelman: Spreading Awareness about EDS

12:15 – 1:00 pm

  • Making an awareness video

1:00 – 2:15 pm

  • Lunch with parents

2:15 – 3:00 pm

  • Lara Bloom: Junior Zebras Wrap-up