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SUMMIT CONFERENCE AGENDA

In addition to the conference program agenda below, there are other fun events for registrants to meet fellow patients and families and advocate on behalf of millions of others who are affected.

 

See all Summit events here.

Got a question? Feel free to contact us at neuroconnectsummit@gmail.com at any time! 

This schedule is subject to change and information will be updated daily.

A children's room is available on the lower level. Supervision for children 12 and under will be required 

SATURDAY | MAY 4, 2019

(MAIN HALL - Fallsgrove Ballroom )

11:00 am

Registration and welcome reception

Light refreshments will be served

11:55 am

Welcome

Neuro Connect Alliance Partners

Cathy Poznik, Bobby Jones CSF

12:00 pm

Physical Therapy in Ehlers-Danlos Syndrome

Patricia Meegan, DPT,L,ATC 

Physical Therapist

12:30 pm

Occupational Therapy's Role in Addressing Fatigue from Chronic Illness

Joanna Behm, MS, OTR/L

Occupational Therapist

1:00 pm

Dysphagia 101

Michelle Wilson, MM, MS, CCC-SLP

Speech Language Pathologist

1:30 pm

Panel Discussion

Moderator: Michael Healy, DPT

Physical Therapist

1:45 pm
Break

2:00 pm

Dysautonomia Resulting from Brainstem Compression

Fraser C. Henderson Sr., MD

Neurosurgeon

3:00 pm

Neuropathic Pain Management
Pradeep Chopra, MD

Anesthesiologist & Pain Specialist

4:00 pm

Panel Discussion

Dr Henderson
Pradeep Chopra, MD

Moderator: Amanda Aikulola, LPN

4:30 pm

Closing Remarks

Cathy Murdick, Dysautonomia Support Network

Join us back at the Main Conference Hall from 6:00 pm - 7:15 pm for the 2019 NCS Welcome Dinner

DSN Patients Choice Awards Main Conference Hall 7:15-9: 00 pm

Red Carpet photos for the event will be taken in the hallway from 7:00-7:15 pm before the event begins.

 

View a full list of all Events in 2019 Neuro Connect Summit here.

SUNDAY | MAY 5, 2019

TRACK 1: MEDICAL KNOWLEDGE

TRACK 2: ADVOCACY & EMPOWERMENT

You can choose to follow one, or both tracks! Feel free to bounce around between the Main Hall and the Breakout Session(s)!

TRACK 1: MEDICAL KNOWLEDGE

(MAIN HALL-Fallsgrove I & II)

8:30 am

The Occult Tethered Cord Syndrome

Petra M. Klinge, MD, PhD

Neurosurgeon/Pediatric Neurosurgeon

9:00 am

Emerging Therapies for Pain Management: My Experience

Addressing Ketamine Infusion, Low-Dose Buprenorphine & Medical Cannibis

 

Sarah Merritt, MD

Anesthesiologist

9:30 am

Chiari I Malformation Disease Mechanisms

John D. Heiss, MD

Neurosurgeon

10:00 am

Pregnancy & Women's Health in Dysautonomia, POTS & EDS

Svetlana Blitshteyn, MD 

Autonomic Neurologist

10:45 am
Break

11:00 am

Palliative Care: Dispelling the Myth & Providing Support for the Whole Family When Someone You Love is Living with a Serious Illness

Adrienne Burroughs, MHS

National Institute of Nursing Research, Liaison

11:30 am

Panel Discussion

Moderator: Lara Bloom, Ehlers-Danlos Society

12:00 pm

LUNCH

12:30 pm

Hypermobility Syndrome and its GI Manifestations 

Richard McCallum, MD

Neuro-Gastroenterologist

1:00 pm

Gastric Emptying, Its Physiology & Treating Gastroparesis

Richard McCallum, MD

Neuro-Gastroenterologist

1:30 pm

Music Therapy & Chronic Illness: Music-Based Strategies for Relaxation & Wellness

Kerry Devlin, MMT, MT-BC

Neurologic Music Therapist

2:15 pm

Treating CSF Disorders: When too much is too much

Mark G. Luciano, MD, PhD

Neurosurgeon

2:45 pm

HEDGE Study and Patient Perspective 

Lara Bloom

Ehlers-Danlos Society 

3:15 pm

Break

3:30 pm

Being Mindful of Pain

Cathryne Maciolek, PsyD

Clinical Psychologist

4:00 pm

Panel Discussion

Moderator: Kaitlyn Esposito, Bobby Jones CSF

5:00 pm

Closing Remarks/Invitation to Networking Reception

Dorothy Poppe, Bobby Jones CSF

Join us in the Hilton Garden in for the Bobby Jones CSF Cinco De Mayo Reception 5:15 - 6:15 pm. Celebrate and unwind with appetizers and drinks with fellow summit attendees and speakers. Open to all registered summit attendees. 

TRACK 2: ADVOCACY & EMPOWERMENT

(MAIN HALL-Fallsgrove III)

8:30 am

Disability Law

Jon Rodis and Kathleen Kane Esq

Disability Specialists

9:00 am

Advocacy 101

Amanda Aikulola

Dysautonomia Support Network

9:30 am

Self Advocacy with friends & family

Dr. Cathryne Maciolek, PsyD

Clinical Psychologist

10:00 am

Support Group & Non-Profit Management

Kendra Myles 

Executive Director EDS Wellness

10:30 am
BREAK

10:45 am

Advocating Online

Taylor Kane

Youth Advocate

11:15 am

Family Dynamics 

Cathy Pederson, PhD

President, Standing Up For POTS

LUNCH
12:00 pm

12:30 pm

Youth Advocacy

Antonio Maltese

Patient Advocate

1:15 pm

Advocating in School

Jane Taft

Founder Potsibility Parents 

2:00 pm

Service Dogs for Independence

Canine Partners for Life

Break
2:30 pm

2:45 pm

Chronic Resiliency & Pain Management

Lynne Julian

Actress/Advocate

3:30 pm

Support Group Meetings Youth, Caregivers, Adult

Moderators: Shani Weber, Cathy Murdick

Emi Doyon, Jennifer Miller, Jane Taft

4:30 pm

unite@thehill Advocacy Day Training Required for all Lobby Day attendees

Taylor Kane & Cathy Poznik, Bobby Jones CSF