Ehlers-Danlos National Foundation

2012 Conference Schedule

Following is a tentative schedule of sessions; however, changes can happen, so please check back for updates. We will post changes as they become available. Last updated: July 19, 2012.

Thursday, August 9, 2012

10:30am–11:30pm	Exhibitor Set-Up	Madison Lobby
11:00am–1:30pm	Board Meeting	Meeting Room 3
12:00–6:00pm	Registration Open & Exhibits on Display	Madison Lobby
	Hospitality Suite/Relaxation Room Available	Meeting Room 1/2
1:00–4:30pm	Physician Consultations (Appointment Only)	Meeting Room 4/5
		Meeting Room 6/7
4:30–6:00pm	Welcome Reception with Exhibitors	Madison Lobby
5:00–6:00pm	Kids & Teens—Meet & Greet	Meeting Rooms 3 & 8

Map of Meeting Rooms

Friday, August 10, 2012

7:30am– 5:00pm	Registration Open & Exhibits on Display		Madison Lobby
7:30am– 5:00pm	Hospitality Suite/Relaxation Room Available		Meeting Room 1 & 2
8:15–8:45am	Welcome and Introduction		Ballroom A/B/C
8:45–9:45am	Keynote & Overview—EDS Today & Tomorrow	Brad Tinkle, MD, PhD	Ballroom A/B/C
10:00–10:45am	Vascular Problems in EDS	James H. Black III, MD, FACS	Meeting Room 4/5
	Living at Home with EDS	Marnie Renda, OTR/L, CAPS, ECHM	Meeting Room 6/7
	Hypermobility: Getting Healthy, Improving Function & Strength	Opal Riddle, PR, DPT & Dawn Westfal, CPT	Ballroom D
	Newly Diagnosed Discussion Group		Ballroom E
10:45–11:00am	Networking with Exhibitors & AM Break		Madison Lobby
11:00–11:45am	Neck and Spine	Atiq Durrani, MD	Meeting Room 4/5
	It's Not in Your Head—Or Is It?	Howard Levy, MD, PhD	Meeting Room 6/7
	Vascular Ehlers-Danlos Syndrome: Placing Recent Studies in Context	Mitzi L. Murray, MD, MA	Ballroom D
	Research Topics (15 minutes each):		Ballroom E
	Understanding the Relationship Between Self-Efficacy, Locus of Control, and Self-Management Behaviors in Adult Patients with Ehlers-Danlos Syndrome	Sabrina Neeley, PhD, MPH
	Pregnancy survey results	Anna Mitchell, MD, PhD
	Poor Sleep and Ehlers-Danlos Syndrome	Susan Cordes, MS, CGC
	Kids & Teens		Meeting Rooms 3 & 8
12:00–12:45pm	Vascular Problems in EDS	James H. Black III, MD, FACS	Meeting Room 4/5
	Sleep Disorders in Ehlers-Danlos Syndrome	Alan Pocinki, MD	Meeting Room 6/7
	Diagnosis and Treatment of TMJ and Head/Neck Pain for the EDS Patient	John Mitakides, DDS	Ballroom D
	Physical Therapy in Pediatric EDS	Paula Melson & Stephanie Powell	Ballroom E
12:45–1:45pm	Lunch & Networking with Exhibitors		Ballroom A/B/C
1:45–2:30pm	Foot and Ankle Issues in Collagen Vascular Disorders	Patrick Agnew, DPM	Meeting Room 4/5
	Pain Management: More than Just a Pill	Anne Lynch-Jordan, PhD	Meeting Room 6/7
	School Integration / Re-entry, Plan for 504, IEP	Mary Kay Irwin, EdD, (ABD)	Ballroom D
	Physical Therapy in Pediatric EDS	Paula Melson & Stephanie Powell	Ballroom E
	Kids & Teens		Meeting Rooms 3 & 8
2:45–3:30pm	Shoulder Instability in Patients with EDS	Keith Kenter, MD	Meeting Room 4/5
	Mast Cell Disorders	Andrew Smith, MD	Meeting Room 6/7
	Ehlers-Danlos Syndrome and Social Security Disability Benefits	Shoshana R. Pehowic, Esq.	Ballroom D
	Aquatic Exercise: Benefits and Principles for the EDS Population	Kathleen Zonarich, PT	Ballroom E
	Kids & Teens		Meeting Rooms 3 & 8
3:00–3:45pm	Networking with Exhibitors & PM Break		Madison Lobby
3:45–4:30pm	Pregnancy in EDS	Ron Jaekle, MD	Meeting Room 4/5
	Occupational Therapy Management of Hypermobility in EDS	Michelle O'Sullivan & Michele Pavlis	Meeting Room 6/7
	Hypermobility: Getting Healthy, Improving Function & Strength	Opal Riddle, PR, DPT & Dawn Westfal, CPT	Ballroom D
	Neck and Spine	Atiq Durrani, MD	Ballroom E
	Kids & Teens		Meeting Rooms 3 & 8
4:45–5:30pm	Vascular Ehlers-Danlos Syndrome: Placing Recent Studies in Context	Mitzi L. Murray, MD, MA	Meeting Room 4/5
	Spouses and Significant Others (Caregivers)	Discussion Group	Meeting Room 6/7
	How to Communicate With Your Doctor & Build Your Medical Team	Linda Neumann-Potash, RN, MN, CBN	Ballroom D
	Vascular EDS	Discussion Group	Ballroom E
	Kids & Teens		Meeting Rooms 3 & 8
5:45–6:30pm	Tai Chi for Joint Strength and Stabilization	Ralph Dehner, COTA/L	Meeting Room 4/5
	Pilates: What Can It Offer the EDS Patient?	Crystal Seamon, PT, DPT, OCS, ATC	Meeting Room 6/7
	Young Adults/Teens Roundtable	Discussion Group	Ballroom A/B/C
	Service Dogs	Canines for Disabled Kids	Ballroom E
6:00–7:30pm	Speaker Reception (by invitation only) Cincinnati Marriott River Center		Terrace IV
6:30–7:30pm	Kids & Teens—Pizza Party		Meeting Rooms 3 & 8

Map of Meeting Rooms

Saturday, August 11, 2012

7:00–7:45am	Professional Advisory Network Meeting		Ballroom D
7:30am–5:00pm	Hospitality Suite/Relaxation Room Available		Meeting Room 1/2
7:30am–8:30pm	Registration Open & Exhibits on Display		Madison Lobby
7:30–8:15am	Networking with Exhibitors		Madison Lobby
8:15–8:30am	Welcome & Announcements		Ballroom A/B/C
8:30–9:30am	Keynote—Hypermobility, Fibromyalgia, and Chronic Pain	Rodney Grahame, CBE, MD, FRCP, FACP
9:30–10:15am	Keynote—Pain Management in Everyday Life	Clair Francomano, MD
10:15–10:30am	Networking with Exhibitors & AM Break		Madison Lobby
10:30–11:15am	How to Communicate With Your Doctor & Build Your Medical Team	Linda Neumann-Potash, RN, MN, CBN	Meeting Room 4/5
	Parents of Children with EDS	Discussion Group	Meeting Room 6/7
	Shoulder Instability in Patients with EDS	Keith Kenter, MD	Ballroom D
	Pain Management: More than Just a Pill	Anne Lynch-Jordan, PhD	Ballroom E
	Kids & Teens		Meeting Rooms 3 & 8
11:30am–12:15pm	It's Not in Your Head—Or Is It?	Howard Levy, MD, PhD	Meeting Room 4/5
	School Integration / Re-entry, Plan for 504, IEP	Mary Kay Irwin, EdD, (ABD)	Meeting Room 6/7
	Mast Cell Disorders	Andrew Smith, MD	Ballroom D
	Living at Home with EDS	Marnie Renda, OTR/L, CAPS, ECHM	Ballroom E
	Kids & Teens		Meeting Rooms 3 & 8
12:15–2:00pm	Lunch and Q&A		Ballroom A/B/C
2:15–3:00pm	Sleep Disorders in Ehlers-Danlos Syndrome	Alan Pocinki, MD	Meeting Room 4/5
	Diagnosis and Treatment of TMJ and Head/Neck Pain for the EDS Patient	John Mitakides, DDS	Meeting Room 6/7
	Pregnancy in EDS	Ron Jaekle, MD	Ballroom D
	Aquatic Exercise: Benefits and Principles for the EDS Population	Kathleen Zonarich, PT	Ballroom E
3:00–3:15pm	Networking with Exhibitors & PM Break		Madison Lobby
3:15–4:15pm	Exhibitor Break Down (early option)		Madison Lobby
3:15–4:00pm	Foot and Ankle Issues in Collagen Vascular Disorders	Patrick Agnew, DPM	Meeting Room 4/5
	Women: Understanding, Preventing, and Managing Pelvic Floor Dysfunction	Kathleen Zonarich, PT	Meeting Room 6/7
	Ehlers-Danlos Syndrome and Social Security Disability Benefits	Shoshana R. Pehowic, Esq.	Ballroom D
	Pilates: What Can It Offer the EDS Patient?	Crystal Seamon, PT, DPT, OCS, ATC	Ballroom E
4:15–5:00pm	Tai Chi for Joint Strength and Stabilization	Ralph Dehner, COTA/L	Meeting Room 4/5
	Occupational Therapy Management of Hypermobility in EDS	Michelle O'Sullivan & Michele Pavlis	Meeting Room 6/7
	Research Topics (15 minutes each):		Ballroom D
	Understanding the Relationship Between Self-Efficacy, Locus of Control, and Self-Management Behaviors in Adult Patients with Ehlers-Danlos Syndrome	Sabrina Neeley, PhD, MPH
	Pregnancy survey results	Anna Mitchell, MD, PhD
	Poor Sleep and Ehlers-Danlos Syndrome	Susan Cordes, MS, CGC
	Memorial Service		Ballroom E
5:00–5:45pm	Networking & Auction		Ballroom A/B/C
6:00–7:00pm	Exhibitor Break Down		Madison Lobby
6:00–8:30pm	Closing Banquet		Ballroom A/B/C

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Thursday, August 9, 2012

Friday, August 10, 2012

Saturday, August 11, 2012