EDS Global Conference 2017 Program storm

DAZZLE VEGAS The Ehlers-Danlos Society Global Learning Conference Bally’s Hotel, Las Vegas September 7-9, 2017

Thank You to Our Sponsors and Exhibitors Gold Sponsor

Bronze Sponsors

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Table of Contents Welcome from the Chair of the Board of Directors...................................... 4 Conference Center Map.........................................................................................5 Schedule of Events: Thursday............................................................................ 6 Friday...................................................................................................................7 Saturday............................................................................................................. 8 Junior Zebras Program........................................................................................ 10 General Information............................................................................................. 11 The Ehlers-Danlos Society Staff.......................................................................12 Tips for Attendees.................................................................................................13 Speakers, The Ehlers-Danlos Society Board of Directors, and Medical & Scientific Board...................................................................14 Donation Form.......................................................................................................15

Safety & Security

BACKPACK HEALTH

Bronze Sponsors TM

Your participation in activities in conjunction with The Ehlers-Danlos Society Global Learning Conference is your sole responsibility and at your own risk.

While the Society’s staff and volunteers will take all reasonable measures to ensure participant safety, we also rely on you to use your best judgement.

Please be sure to keep your belongings with you at all times; we do not have security or emergency medical professionals onsite. If you have not already done so, please provide The Ehlers-Danlos Society with emergency contact information in case an urgent situation should arise.

By entering these premises, you understand that you may be photographed, filmed, or videotaped and you hereby give The Ehlers-Danlos Society the unqualified right to take pictures and/or recordings of you and grant the perpetual right to use your likeness, image, photo (collectively, “image”), without compensation, for broadcast or exhibition in any medium, and to put the finished pictures/recordings to any legitimate use without limitation or reservation. You hereby waive, release and forever discharge The EhlersDanlos Society from and against any and all claims or actions arising out of or resulting from any use of your image. The Ehlers-Danlos Society shall not be obligated to use, and may elect not to use, your image.

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Global Learning Conference 2017

Welcome to Las Vegas!

On behalf of The Ehlers-Danlos Society Board of Directors, Medical and Scientific Board, our staff, and volunteers, I want to thank you for being part of this wonderful conference.

Global Learning Conferences are an essential part of our work; they connect us with fellow EDSers and with knowledgeable professionals in the medical community. We have amazing speakers, including top physicians in their fields. There are sessions on coping and managing some of the difficult issues we face; discussion groups; and a chance to network with vendors.

There are exciting general sessions. This is an opportunity to learn the most up-to-date information about the Ehlers-Danlos syndromes and how to live with them. The Zebra Ball is a new event this year, providing us a space to gather and relax, apart from the intense information presented during the days Over these three days we come together as the world’s largest gathering of people with EDS, family caregivers, and experts.

We learn from each other’s experiences and enjoy each other’s company. We celebrate each other this weekend: in spite of our daily challenges, our pain and struggles, we are a community.

We hope everyone returns home with helpful new information and with lifelong friendships and connections.

Sandra Aiken Chack Chair, Board of Directors

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SCHEDULE

BALLY’S LAS VEGAS Meeting Facilities Map

INDIGO TOWER

BALLY’S EVENT CENTER

Event Center Office

Breakout Sessions Bronze Bronze Bronze 3 2 4

DIRECTOR’S ROOM

Loading Dock Bronze 1

Banquet Operations Convention Services/ Catering Relaxation Room

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GRAND SALON Exhibitors

6

Palace 5 Meeting Rooms

4 3

Registration Office

Silver GRAND BALLROOM Plenary Sessions Gold

2 1

2

1

3

Group Information

Platinum Junior Zebras

Security

Elevators

CASINO LEVEL Please note that all information is subject to change without notice.

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Global Learning Conference 2017

Friday, September 8, 2017

Thursday, September 7, 2017 10:00 am – 1:00 pm

Registration

Grand Salon

10:00 am – 6:30 pm

Relaxation Room

Palace 6/7

10:00 am – 6:30 pm

Exhibits on Display

Grand Salon

10:00 am – 1:00 pm

Physician Consultations

Grand Ballroom

2:00 – 3:00 pm

Plenary Session: An Old-timer’s View of the New EDS Criteria*

3: 15 – 4:00 pm

4:15 – 5:00 pm

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SCHEDULE

Prof. Rodney Grahame

Grand Ballroom Gold/Silver

Developing a SelfDr. Leslie Russek Management Plan for hEDS*

Grand Ballroom Gold/Silver

Evaluation and Management of Autonomic Dysfunction in EDS*

Dr. Alan Pocinki

Bronze 2

Rare Types of EDS*

Dr. Clair Francomanok

Bronze 3

Chronic Pain in EhlersDanlos Syndromes*

Dr. Pradeep Chopra

Bronze 4

Evaluation & Management of Fatigue In EDS*

Dr. Alan Pocinki

Grand Ballroom Gold/Silver

Postural Solutions for Instability: The Alexander Technique and EDS*

Ann Rodiger & Carol Boggs

Bronze 2

Mast Cell

Dr. Anne Maitland

Bronze 3

Chronic Pain in EhlersDanlos Syndromes*

Dr. Pradeep Chopra

Bronze 4

5:00 – 6:30 pm

Welcome Reception with Exhibitors

6:00 – 7:00 pm

Discussion Group, Newly Diagnosed

Maggie Buckley

Bronze 2

Start an EDS Support Group+Raise EDS Awareness=Friends and Doctors Who “Get It”

Shani Weber

Bronze 3

Discussion Group, Caregivers

Tom Query

7:30 am – 6:00 pm

Grand Salon

Visit with Exhibitors Relaxation Room

Palace 6/7

8:30 – 8:45 am

Welcome and Introduction to Hypermobility Plenary Session

Grand Ballroom Gold/Silver

8:45 – 9:15 am

hEDS in Adults*

Dr. Howard Levy

9:15 – 9:45 am

Hypermobility in Children*

Dr. Tony Kline

9:45 – 10:15 am

Hypermobility Spectrum Disorders*

Dr. Clair Francomano

10:15 am – 10:45 pm

Hypermobility Plenary Session Question and Answer

10:45 – 11:15 am

Morning Break and Visit with Exhibitors

Grand Salon

11:15 am – 12 noon

Evaluation and Management of Fatigue In EDS*

Dr. Alan Pocinki

Grand Ballroom Gold/Silver

Postural Solutions for Instability: The Alexander Technique and EDS*

Ann Rodiger & Carol Boggs

Bronze 2

Mast Cell*

Dr. Anne Maitland

Bronze 3

Foot and Ankle Update*

Dr. Patrick Agnew

Bronze 4

Progress in the Psychiatric and Psychological Dimensions of EDS: “It is not just in your mind”*

Dr. Antonio Bulbena

Grand Ballroom Gold/Silver

Ehlers-Danlos Syndrome and Medical Cannabis*

Ellen Lenox Smith

Bronze 2

Diagnosis, Assessment, Treatment and Care Plans for Children With Vascular EDS*

Dr. Peter Byers

Bronze 3

Strengthen and Control Your Hypermobile Core With Pilates*

Jeannie Di Bon

Bronze 4

12:15 – 1:00 pm

Grand Ballroom Platinum

Bronze 4

Registration

1:00 – 2:15 pm

Lunch & Plenary Session: Jason Parry Pacing

Grand Ballroom Gold/Silver

8 2:15– 3:00 pm

3:15 – 4:00 pm

4:15 – 5:00 pm

7:00 pm

Global Learning Conference 2017 Ehlers-Danlos Syndrome and Medical Cannabis*

Ellen Lenox Smith

Grand Ballroom Gold/Silver

TMJ and Craniocervical Instability in Chiari, Hypermobile, and EDS Patients*

Dr. John Mitakides

Bronze 2

Discussing Pain: How to help your health care provider help you?

Linda NeumannPotash

Classical EDS*

Dr. Clair Francomano Bronze 4

Developing a SelfManagement Plan for hEDS*

Dr. Leslie Russek

Grand Ballroom Gold/Silver

Evaluation and Management of Autonomic Dysfunction in EDS*

Dr. Alan Pocinki

Bronze 2

Rare Types of EDS*

Dr. Clair Francomano Bronze 3

Foot and Ankle Updates*

Dr. Patrick Agnew

Bronze 4

Diet and Supplements*

Dr. Heidi Collins

Grand Ballroom Gold/Silver

TMJ and Craniocervical Instability in Chiari, Hypermobile, and EDS Patients*

Dr. John Mitakides

Bronze 2

Discussing Pain: How to help your health care provider help you?

Linda NeumannPotash

Bronze 3

Classical EDS*

Dr. Clair Francomano Bronze 4

Zebra Ball (separate admission required)

Saturday, September , 2017 7:30 am – 3:00 pm

Registration

Grand Salon

Plenary Session: GI Manifestations of hEDS and the HSD*

Dr. Adam Farmer

Grand Ballroom Gold/Silver

10:00 – 10:45 am

Orthopedics*

Dr. Cathy Raggio

Grand Ballroom Gold/Silver

Progress in the Psychiatric and Psychological Dimensions of EDS: “It is not just in your mind”*

Dr. Anthonio Bulbena

Bronze 2

Diagnosis, Assessment, Treatment and Care Plans for Children With Vascular EDS*

Dr. Peter Byers

Bronze 3

Strengthen and Control Your Hypermobile Core With Pilates*

Jeannie Di Bon

Bronze 4

10:45 – 11:15 am

Morning Break and Visit with Exhibitors

Grand Salon

11:15 – 12 noon

Orthopedics*

Grand Ballroom Gold/Silver

Welcome and Announcements

Adults With Vascular EDS*

Dr. Peter Byers

Bronze 3

Diet and Supplements*

Dr. Heidi Collins

Bronze 4

12:15 – 1:00 pm

Plenary Session: The Differential Diagnosis of Headaches in EDS*

Dr. Fraser Henderson

Grand Ballroom Gold/Silver

1:00 – 2:15 pm

Lunch & Plenary Session: Jason Parry Managing Dislocations and Subluxations*

Grand Ballroom Gold/Silver

2:15 – 3:00 pm

Grief Support & Memorial Service

Linda NeumannPotash

Grand Ballroom Gold/Silver

Disability*

Jon Rodis

Bronze 3

Palace 6/7 Sandy Chack and Lara Bloom

Grand Ballroom Gold/Silver

Dr. Cathy Raggio

Assessment of Classical EDS Dr. Clair Francomano Bronze 2 in Children*

Visit with Exhibitors Relaxation Room

8:30 – 8:45 am

8:45 – 9:45 am

Bronze 3

Grand Ballroom Gold/Silver

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SCHEDULE

2:15 – 3:30 pm

CME Wrap-up* (restricted to and mandatory for CME track)

Bronze 4

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

Bronze 2

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Global Learning Conference 2017

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GENERAL INFORMATION

General Information

Junior Zebras Grand Ballroom Platinum Thursday, September 7, 2017

Badges

The Ehlers-Danlos Society Store

For access to conference sessions and events, we ask that you wear your badge at all times. Please pick up your badge at the registration desk in the Grand Salon.

Your cooperation is appreciated.

The Ehlers-Danlos store is open for business! Located next to the registration desk, please stop by at store hours to purchase new Society branded merchandise to help keep our mission alive. Hours are Thursday, 5 – 6:30 pm; Friday, 10:45 – 11:15 am and 1:00 – 2:15 pm; and Saturday, 10:45 – 11:15 am and 1:00 – 2:15 pm.

2:00 – 3:00 pm

Keynote/Icebreaker activity

Victoria Graham

3:15 – 4:00 pm

Q&A with a geneticist

Dr. Howard Levy

4:15 – 5:00 pm

Coping Strategies for EDS Kids

Dr. Antonio Bulbenna

5:00 – 6:00 pm

Welcome Reception

Junior Zebras Program

6:00 – 7:00 pm

Supervised free time (in Bronze 1)

The Ehlers-Danlos Society requires children under age 13 to be signed in and out by a parent or legal guardian each time the children leave or enter the Junior Zebra program. Sign-in sheets will be available at the registration desk.

The Society and its staff and volunteers will assume no liability for Junior Zebra participants.

Friday, September 8, 2017 8:30 – 8:45 am

Morning Welcome

Volunteers

8:45 – 10:30 am

Creative writing workshop

Brianna Greenspan

10:45 – 11:15 am

Break with parents (Grand Salon)

11:15 am – 12 noon

How to Talk with Your Doctor

12:15 – 1:00 pm

Nutrition and EDS

1:00 – 2:15 pm

Lunch with parents (Grand Ballroom Silver/Gold)

2:15 – 5:00 pm

Songwriting workshop

Barby HalsteadWorrell Dr. Heidi Collins

Christina Bloom

Saturday, September 9, 2017

Meal Information Please note that breakfast will be on your own. Bally’s has breakfast options available. The Ehlers-Danlos Society is pleased to provide a welcome reception on Thursday, and lunch on Friday and Saturday.

8:30 – 8:45 am

Morning Welcome

Volunteers

Tax Deductible?

8:45 – 9:45 am

Discussion Group: What Do You Want to Talk About?

Barby Halstead-Worrell

10:00 – 10:45 am

Creating a Plan for Managing hEDS in Children and Adolescents (parents invited)

Dr. Leslie Russek

10:45 – 11:15 am

Break with parents (Grand Salon)

11:15 – 12 noon

Spreading Awareness about EDS

12:15 – 1:00 pm

Making an Awareness Video

1:00 – 2:15 pm

Lunch with parents (Grand Ballroom Silver/Gold)

2:15 – 3:00 pm

Junior Zebras Wrap-Up

Did you know medical conferences may be tax deductible? According to the Internal Revenue Service’s website at http://www. irs.gov/publications/p502/ar02.html, “you can include in medical expenses amounts paid for admission and transportation to a medical conference if the medical conference concerns the chronic illness of yourself, your spouse, or your dependent.

The costs of the medical conference must be primarily for and necessary to the medical care of you, your spouse, or your dependent. The majority of the time spent at the conference must be spent attending sessions on medical information.”

Jessica Adelman

Lara Bloom

Relaxation Lounge This space is set aside to rest and to house our Memorial Corner, where you will find a beautiful album filled with pictures of those no longer with us.

Post-Conference Evaluation Your opinion is important to us and helps us improve future conferences and services for our EDS community. Please save your comments, suggestions for improvement and testimonials until the conference concludes. We’ll email you after the conference to give you a chance to provide your assessments. We hope you enjoy the event and look forward to receiving your important feedback. Thank you!

Presentations and Handouts Electronic materials are accessible through the web app at https://app. eventdrive.com/2017conference and during (where possible) and after the conference on The Ehlers-Danlos Society’s web site at https://www. ehlers-danlos.com/2017-eds-globalconference/. The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them. The Society does not control and is not responsible for the content of presentations.

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Global Learning Conference 2017

To all the doctors, nurses, medical professionals, and caregivers who help those with Ehlers-Danlos syndromes and hypermobility spectrum disorders…

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Tips for Attendees nn Pace yourself. You know your body and its limits. If you need to rest, DO IT! Please do not feel shy about leaving in the middle of a session if you need a break. nn Be comfortable and wear layers. Meeting room temperatures tend to fluctuate. Wearing layers allows you to warm up and cool down when needed.

ehlers-danlos.com Headquarters: P.O. Box 87463 | Montgomery Village, MD 20886 P: +1 410-670-7577 | info@ehlers-danlos.com Europe: Office 7 | 35-37 Ludgate Hill | London, EC4M 7JN | UK P: +44 203 887 6132

Staff Lara Bloom, Executive Director International Shane Robinson, Executive Director USA Jessica Adelman, Program Manager Shani Weber, Local Groups/Outreach Liaison Mark C. Martino, Consultant https://www.facebook.com/ehlers.danlos

http://bit.ly/EDSgoogle

https://twitter.com/TheEDSociety

http://bit.ly/EDSocietyYouTube

https://www.instagram.com/ehlers.danlos

http://bit.ly/EDSocietyPinterest

bit.ly/EDSocietyInspire Please remember that The Ehlers-Danlos Society does not offer medical diagnosis or recommend treatment options or physicians. The Ehlers-Danlos Society is a nonprofit organization serving the global community to effect change and progress for the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Strength begins with hope

nn Please do not wear fragrances. We have many in our group with chemical sensitivities, and we need to make sure they can enjoy the conference too. nn Make connections. Being surrounded by people who understand is a true gift, and one that is treasured by those who have come to previous conferences. We hear over and over again that one of the best parts of the conference is to see old friends, make new ones, to share experiences, to not have to explain, and to have the opportunity to join together as a community. nn Raise awareness. One of the most important missions of The Ehlers-Danlos Society is to raise awareness and share knowledge.

The conference helps to do this on many levels. In addition to the education inherent in the event, many come away from the conference newly inspired to help spread the word in their communities and beyond. The energy generated at the conference is palpable, and helps propel the work of the organization forward.

Feel the energy! nn Have fun. Having fun is not to be minimized. Because EDS can drain us of energy and interfere with doing the things we would like, sometimes just having fun is hard to do. The conference is filled with learning, sharing, and … FUN! nn Please turn cell phones off or on vibrate. Thank you for remembering that recording is not allowed in any session.

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Global Learning Conference 2017

Board of Directors

Sandra Aiken Chack, Chair Susan Hawkins, Vice Chair On behalf of the EDS community, the Board of Directors and staff of The John Zonarich, Esq., Secretary Ehlers-Danlos Society would like to Richard Malenfant, MBA, MPH, extend a heartfelt thank you to all of the Treasurer fantastic speakers at the 2017 conference.

This event would not have been possible Peter Cohl without their tremendous participation Heidi Collins, MD and support, and for that we are truly Clair Francomano, MD grateful.

Susan Haskell Patrick Agnew, DPM Fraser C. Henderson, Sr., MD Carol Boggs, M.AmSAT Elizabeth Herndon Maggie Buckley Fransiska Malfait, MD, PhD Antonio Bulbena, MD, PhD, MSc Jane Mitakides Peter Byers, MD Linda Neumann-Potash, RN, MN, Pradeep Chopra, MD, MHCM CBN Heidi Collins, MD Jakob Rasmussen Jeannie Di Bon, MA, PMA-CPT Adam D. Farmer, PhD, FRCP Medical and Scientific Board Clair Francomano, MD, PhD Fransiska Malfait, MD, PhD, Chair Victoria Graham Rodney Grahame CBE, MD, FRCP, Clair Francomano, MD, PhD, Vice FACP, FRSA Chair Brianna Greenspan Qasim Aziz, MBBS, FRCP, PhD Barby Halstead-Worrell Peter Byers, MD Fraser Cummins Henderson, Sr., MD Marco Castori, MD, PhD Antonie Kline, MD Raymond Dalgleish, PhD Howard Levy, MD, PhD Cecilia Giunta, PhD Anne Maitland, MD, PhD Rodney Grahame CBE, MD, FRCP, John Mitakides, DDS, FAACP FACP, FRSA Jason Parry Linda Neumann-Potash, RN, MN, CBN Alan Hakim, MA, FRCP Tomoki Kosho, MD Alan Pocinki, MD, PLLC Cathleen L. Raggio, MD Tom Query, MDiv, LPC Cathy Raggio, MD Glenda Sobey, MB ChB, BSc Med Ann Rodiger, M.AmSAT (Hons), FC Derm Jon Rodis Jane Simmonds, MCSP, MMACP, Leslie Russek, PT, DPT, PhD, OCS FHEA Ellen Lenox Smith Brad Tinkle, MD, PhD Shani Weber, MS

DONATION Donations to The Ehlers-Danlos Society are critical to our ability to raise awareness and visibility of Ehlers-Danlos syndrome. The Society is a 501(c)(3) organization, so your donation is a tax-deductible charitable contribution; and your gift is deeply appreciated.

Please note below if your contribution is in memory or honor of an individual, and to whom and where an acknowledgement should be sent.

Thank you for your generous support!

AMOUNT

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Other: $

Dedicated to the EDS Center for Clinical Care and Research In memory of: In honor of:

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üYes! I’m making a tax-deductible donation to The Ehlers-Danlos Society in support of our mission to effect change and progress in the world of EDS. Check attached (payable to The Ehlers-Danlos Society) # Please charge my credit card, below, in the amount of $ CREDIT CARD INFORMATION Must match billing information on your credit card:

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Signature You can return the completed form to the registration desk in the Key Ballroom Foyer or mail to: The Ehlers-Danlos Society • P.O. Box 87463 • Montgomery Village, MD 20886 T: +1 410-670-7577 | info@ehlers-danlos.com The Ehlers-Danlos Society is a 501(c)(3) non-profit organization with Tax ID Number 38-2813140 in the USA.

Our strength begins with hope. And, hope begins one gift at a time.

Ehlers-Danlos syndrome is one of world’s most vexing medical challenges.

Yet, together, we’ve made progress.

Our community has never been stronger.

Thank you.

Through your tireless devotion, generosity, and creativity, we are raising awareness, advancing our scientific understanding of Ehlers-Danlos, and improving access to early diagnosis and treatment—worldwide.

But, we cannot rest. There is still much more work to be done.

Join with us and give as you are able.

Every gift counts. ehlers-danlos.com/giving