ednf 2015 conference program

Welcome!

Learning ConferenceHilton Baltimore § Baltimore, MarylandAugust 13-15

201530TH ANNIVERSARY

SILVER PARTNER

BRONZE PARTNER

SILVER SPONSORS

BRONZE SPONSOR

Table of ContentsWelcome from the Conference Chair ..................................................2

Conference Center Map .......................................................................3

Schedule of Events: Thursday ..............................................................4

Friday ..............................................................................................4

Saturday ..........................................................................................7

Kids Schedule .....................................................................................10

Teens Schedule ...................................................................................11

EDNF Board of Directors and Staff ....................................................13

General Information ..........................................................................14

Other Tips ..........................................................................................16

Conference Speakers ..........................................................................19

Professional Advisory Network ..........................................................21

Donation Form ..................................................................................24

Safety and SecurityYour participation in activities in conjunction with EDNF’s 2015 Learning Conference is your sole responsibility and at your own risk. While EDNF 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 EDNF with emergency contact information in case an urgent situation should arise.

2 2015 Conference

Welcome to Baltimore!On behalf of the EDNF Board of Directors, Professional Advisory Network, our staff, and volunteers, I want to thank you for attending this important event and being part of EDNF’s 30th Anniversary. Among other achievements this past year, we’ve seen the opening of the EDNF Center for Clinical Care and Research, and its first conference for medical professionals; several online seminars; and with our first video contest, EDS Awareness Month was our largest ever.

Learning Conferences are an essential part of EDNF’s work; they connect you, our members, with other EDSers and with knowledgeable professionals in the medical community. We have amazing speakers, including many 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. The general sessions this year are exciting. This is a chance to learn the most up-to-date information about Ehlers-Danlos syndromes and how to live with them.

Over these days the world’s largest gathering of people with EDS, family caregivers, and experts come together. We exchange ideas and gain valuable knowledge; 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, the pain, and the emotional struggles, we are a community. We hope everyone returns home with helpful new information and with lifelong friendships and connections.

Enjoy the program and our time together as we look forward to the International Symposium in May 2016, and to a wonderful future as EDNF continues to grow in new ways!

Sandra Aiken ChackEDNF 2015 Conference Chair

3

WESTB U I L D I N G

WESTB U I L D I N G

ARMISTEADPICKERSGILL

910

1112

7

8

KEY BALLROOMKEY BALLROOM FOYER

5

6

12

34

EASTB U I L D I N G

REGISTRATION DESK

STAIRS ELEVATOR RESTROOMSESCALATORATM

BREAKOUT SESSION .................... KEY BALLROOM 1/2, 3/4, 9/10, 11

GENERAL SESSION....................... KEY BALLROOM 5-8

KIDS .............................................. ARMISTEAD, PICKERSGILL

RELAXATION LOUNGE ................. KEY BALLROOM 12

TEENS ........................................... JOHNSON

N

N

PEALE

JOHNSON

LATROBERUTH

DIAMOND TAVERNLOBBY BAR

PARKINGGARAGE

MAIN ENTRANCE • PRATT STREET

CAMDEN STREET

GIFT SHOP

BA

ABC

1FLOOR

2FLOOR

JIMMY JOHN’S

Schedule and room assignments may change.

4 2015 ConferenceThursday, August 13, 2015

11:00 am – 6:30 pm

Registration Key Ballroom Foyer

12 noon – 6:00 pm

Hospitality Suite and Relaxation Room Key Ballroom 12

1:00 – 4:00 pm

Physician Consultations(By appointment only)

Key Ballroom 1 – 4

4:00 – 6:30 pm

Exhibits on Display Key Ballroom Foyer

4:00 – 5:00 pm

Special Presentation: EDNF Center for Clinical Care and Research Update

Clair Francomano, MD

Key Ballroom 9

5:00 – 6:00 pm

Kids & Teens Meet and Greet

Armistead & Pickersgill

5:00 – 6:30 pm

Welcome Reception with Exhibitors and Silent Auction

Key Ballroom Foyer

6:00 – 6:45 pm

Discussion Group: Newly Diagnosed

Key Ballroom 9

Friday, August 14, 2015

7:30 am – 6:00 pm



8:00 am – 6:00 pm


8:30 – 8:45 am

Welcome and Introduction Key Ballroom 5 – 8

8:45 – 9:30 am

General Session: What Is EDS — and What Isn’t?

Howard Levy, MD, PhD

Teens Program: Encouraged to attend Dr. Levy’s General Session

Kids Program: Welcome, Introduction, and Interactive Activities


http://www.ednf.org/ednf-helpline

5 SCHEDULE

9:45 – 10:30 am

No Allergies, But Still Reacting — Understanding Mast Cell Activation Disorder

Anne Maitland, MD, PhD


How Physical Therapy Can Help Decrease Your Pain While Living with EDS

Kevin Muldowney, PT Key Ballroom 3 – 4

Less Is More Albina Tamalonis, PsyD


Tethered Cord Syndrome in Ehlers-Danlos

Petra Klinge, MD, PhD

Key Ballroom 11

Teens Program: Welcome and Introduction

Johnson

Kids Program: Arts and Crafts


10:30 – 10:45am

Morning Break and Visit with Exhibitors Sponsored by YouScript

Key Ballroom Foyer

10:45 – 11:30 am

Updates on Foot and Ankle Care

Patrick Agnew, DPM, FACFAS, FACFAP


Art, Music, and Coping: Alternative Therapies for Adults

April Buscher, MT-BC Key Ballroom 3 – 4

Neurological Manifestation of Ehlers-Danlos Syndromes, Diagnosis and Treatment

Fraser Henderson, MD


Teens Program: Social Time and Activities

Johnson

Kids Program: What Is EDS?

Heidi Collins, MD Armistead & Pickersgill

11:45 am – 12:30 pm

Psychiatric Misdiagnosis in Ehlers-Danlos Syndrome

Alan Pocinki, MD Key Ballroom 1 – 2

EDS Awareness in TMJ Treatment

John Mitakides, DDS, DAACP


Teens Program: Adaptive Physical Education

Melanie McManus, CAPE

Johnson

Kids Program: Zebra Arts and Crafts


12:30 – 1:45 pm

Lunch and Keynote Presentation: Postural Tachycardia Syndrome Associated with EDS

Blair Grubb, MD Key Ballroom 5 – 8

6 2015 Conference1:45 – 2:30 pm

Orthostatic Intolerance in EDS: Not Just POTS

Peter Rowe, MD Key Ballroom 3 – 4

Self-Defense, Martial Arts, and EDS/Dysautonomia (Part A)

Sensei Tony and Sama Bellomo

Key Ballroom 11

Teens Program: Art, Music, and Coping for Teens

April Buscher, MT-BC Johnson

Kids Program: Adaptive Physical Education

Melanie McManus, CAPE


2:45 – 3:30 pm

Pain Management Options in Ehlers-Danlos Syndrome

Pradeep Chopra, MD Key Ballroom 1 – 2

Easy Steps to Start a Local Group — Empowered for Support, Education, and EDS Awareness

John Ferman and Deanna Hamm


Self-Defense, Martial Arts, and EDS/Dysautonomia (Part B)


Key Ballroom 11

Teens Program: Physical Therapy

Kathy Zonarich Johnson

Kids Program: Seeing the World in Shapes


3:30 – 3:45 pm

Afternoon Break and Visit with Exhibitors Key Ballroom Foyer

3:45 – 4:30 pm

What, How, and When: Genetic Testing in EDS for the Non-Geneticist

Mitzi Murray, MD, MA, FACMG


Living Life Again with Dignity Using Medical Marijuana

Ellen Lenox Smith Key Ballroom 3 – 4

Less Is More Albina Tamalonis, PsyD


Artful Advocacy for Patients: Skills for You, Your Family, and Your Community

Shani Weber and Heather Butler-Pierce

Key Ballroom 11

Teens Program: Coping/Pain Management Discussion Group

Heidi Collins, MD Johnson

Kids Program: Creative Corner — Art and Music for Kids

April Buscher, MT-BC Armistead & Pickersgill

7SCHEDULE

4:45 – 5:30 pm

Social Security Disability Jon Rodis and Kathleen Kane


Physical Therapy and Ehlers-Danlos Syndrome — From a Structural Approach to a Process Approach

Jan Dommerholt, PT, DPT, MPS, DAAPM


What Does Your Dog Do? Kristin Hartness Key Ballroom 9 – 10

Tethered Cord Syndrome in Ehlers-Danlos

Petra Klinge, MD, PhD

Key Ballroom 11

Teens Program: How to Define Your Zebra Stripes

Lara Bloom Johnson

Kids Program: Fun and Games


5:30 – 6:30 pm

Roundtable Discussion: Young Adults

Maggie Ridgley Key Ballroom 5 – 8

Saturday, August 15, 2015

7:30 am – 5:00 pm



8:00 am – 4:15 pm


7:00 – 8:00 am

PAN Meeting(Invitation only)


8:00 – 10:00 am

Kids Program: Safari Craft Activities


8:00 – 8:15 am

Announcements Key Ballroom 5 – 8

8:15 – 9:00 am

General Session: EDS: Past, Present, and Future

Rodney Grahame, MD, CBE, FRCP, FACP

Teens Program: Encouraged to attend Dr. Grahame’s General Session

9:15 – 10:00 am

General Session: GI Issues in EDS

Heidi Collins, MD Key Ballroom 5 – 8

Teens Program: Encouraged to attend Dr. Collins’ General Session

10:00 – 10:15 am

Morning Break and Visit with Exhibitors Key Ballroom Foyer

8 2015 Conference10:15 – 11:00 am

Pain Management Options in Ehlers-Danlos Syndrome

Pradeep Chopra, MD Key Ballroom 1 – 2

Classical EDS Mark Lavallee, MD, GSCS, FACSM


Psychiatric Misdiagnosis in Ehlers-Danlos Syndrome

Alan Pocinki, MD Key Ballroom 9 – 10

What, How, and When: Genetic Testing in EDS for the Non-Geneticist

Mitzi Murray, MD, MA, FACMG

Key Ballroom 11


Johnson

Kids Program: How to Define Your Zebra Stripes

Lara Bloom Armistead & Pickersgill

11:15 am – 12 noon

Orthostatic Intolerance in EDS: Not Just POTS

Peter Rowe, MD Key Ballroom 1 – 2

Physical Therapy and Ehlers-Danlos Syndrome — From a Structural Approach to a Process Approach



EDS Awareness in TMJ Treatment

John Mitakides, DDS, DAACP


Exercise and EDS/Rehab Mark Lavallee, MD, GSCS, FACSM

Key Ballroom 11

Teens Program: Peer Discussion Group

Johnson

Kids Program: What Does Your Dog Do?

Kristin Hartness Armistead & Pickersgill

12 noon – 1:15 pm

Lunch and Keynote Presentation: EDS International Symposium

Lara Bloom Key Ballroom 5 – 8

To all the doctors, nurses, medical professionals, and caregivers

who help those with EDS:

9 SCHEDULE

1:15 – 2:00 pm

Updates on Foot and Ankle Care

Patrick Agnew, DPM, FACFAS, FACFAP


Neurological Manifestation of Ehlers-Danlos Syndromes, Diagnosis and Treatment

Fraser Henderson, MD


How Physical Therapy Can Help Decrease Your Pain While Living with EDS

Kevin Muldowney, PT Key Ballroom 9 – 10

Artful Advocacy for Patients: Skills for You, Your Family, and Your Community

Shani Weber and Heather Butler-Pierce

Key Ballroom 11

Teens Program: What Does Your Dog Do?

Kristin Hartness Johnson

Kids Program: Fun and Games


2:15 – 3:00 pm

No Allergies, But Still Reacting — Understanding Mast Cell Activation Disorder

Anne Maitland, MD, PhD


Living Life Again with Dignity Using Medical Marijuana

Ellen Lenox Smith Key Ballroom 3 – 4

Social Security Disability Jon Rodis and Kathleen Kane


Easy Steps to Start a Local Group — Empowered for Support, Education, and EDS Awareness

John Ferman and Deanna Hamm

Key Ballroom 11

Teens Program: Self-Defense, Martial Arts, and EDS/Dysautonomia


Johnson

Kids Program: Safari Scavenger Hunt


3:00 – 3:15 pm

Visit with Exhibitors Key Ballroom Foyer

3:15 – 4:00 pm

Discussion Group: Vascular EDS Key Ballroom 1 – 2

Discussion Group: Classical EDS Key Ballroom 3 – 4

Discussion Group: Parents Key Ballroom 9 – 10

Discussion Group: Spouses/Caregivers Key Ballroom 11


Johnson

Kids Program: Free Play


4:15 pm- 5:00 pm

Physicians Forum (For medical professionals only)


10 2015 Conference

KIDS SCHEDULE (Kids Room: Armistead and Pickersgill)

Thursday, August 13, 2015 5:00 – 6:00 pm Meet and Greet (Armistead and Pickersgill)

Friday, August 14, 2015 8:45 – 9:30 am Welcome, Introduction, and Interactive Activities 9:45 – 10:30 am Arts and Crafts† 10:30 – 10:45 am Break and Visit with Exhibitors (Key Ballroom Foyer) 10:45 – 11:30 am What Is EDS? with Heidi Collins, MD 11:45 am – 12:30 pm Zebra Arts and Crafts 12:30 – 1:45 pm Lunch with Parents (Key Ballroom 5 – 8) and Keynote Presentation: Blair Grubb, MD Postural Tachycardia Syndrome Associated with EDS 1:45 – 2:30 pm Adaptive Physical Education with Melanie McManus, CAPE 2:45 – 3:30 pm Seeing the World in Shapes† 3:30 – 3:45 pm Break and Visit with Exhibitors (Key Ballroom Foyer) 3:45 – 4:30 pm Creative Corner — Art and Music for Kids with April Buscher, MT-BC 4:45 – 5:30 pm Fun and Games

Saturday, August 15, 2015 8:00 – 10:00 am Safari Craft Activities† 10:00 – 10:15 am Break and Visit with Exhibitors (Key Ballroom Foyer) 10:15 – 11:00 am How to Define Your Zebra Stripes with Lara Bloom 11:15 – 12 noon What Does Your Dog Do? with Kristin Hartness 12 noon – 1:00 pm Lunch with Parents (Key Ballroom 5 – 8) and Keynote Presentation: Lara Bloom EDS International Symposium 1:15 – 2:00 pm Fun and Games 2:15 – 3:00 pm Safari Scavenger Hunt 3:15 – 4:00 pm Free Play

† Optional time for students to join parents in meeting with the exhibitors.

11 KIDS & TEENS SCHEDULES

TEENS SCHEDULE (Teens Lounge: Johnson)

Thursday, August 13, 2015 5:00 – 6:00 pm Meet and Greet (Armistead and Pickersgill)

Friday, August 14, 2015‡ 8:45 – 9:30 am Encouraged to attend General Session with Howard Levy, MD, PhD What Is EDS — and What Isn’t? 9:45 – 10:30 am Welcome and Introduction‡ 10:30 – 10:45 am Break and Visit with Exhibitors (Key Ballroom Foyer) 10:45 – 11:30 am Social Time and Activities 11:45 – 12:30 pm Adaptive Physical Education with Melanie McManus, CAPE‡ 12:30 – 1:45 pm Lunch (Key Ballroom 5 – 8) and Keynote Presentation: Blair Grubb, MD Postural Tachycardia Syndrome Associated with EDS 1:45 – 2:30 pm Art, Music, and Coping for Teens with April Buscher, MT-BC 2:45 – 3:30 pm Physical Therapy with Kathy Zonarich‡ 3:30 – 3:45 pm Break and Visit with Exhibitors (Key Ballroom Foyer)‡ 3:45 – 4:30 pm Coping/Pain Management Discussion Group with Heidi Collins, MD‡ 4:45 – 5:30 pm How to Define Your Zebra Stripes with Lara Bloom

Saturday, August 15, 2015‡ 8:15 – 9:00 am Encouraged to attend General Session with Rodney Grahame, MD, CBE, FRCP, FACP EDS: Past, Present and Future‡ 9:15 – 10:00 am Encouraged to attend General Session with Heidi Collins, MD GI Issues in EDS ‡ 10:00 – 10:15 am Break and Visit with Exhibitors (Key Ballroom Foyer) 10:15 – 11:00 am Social Time and Activities 11:15 – 12 noon Peer Discussion Group‡ 12 noon – 1:00 pm Lunch (Key Ballroom 5 – 8) and Keynote Presentation: Lara Bloom EDS International Symposium 1:15 – 2:00 pm What Does Your Dog Do? with Kristin Hartness 2:15 – 3:00 pm Self-Defense, Martial Arts, and EDS/Dysautonomia with Sensei Tony and Sama Bellomo 3:15 – 4:00 pm Social Time and Activities

‡ Teens Lounge will be open and available for relaxation and socializing, but will not be staffed.

12 2015 Conference

Make d i s loca t ions a th ing o f the pas t

Silver Ring Splint CompanyBetter Splints, Better fi t, Better options

Please visit our website to fi nd out morewww.SilverRingSplint.com

SIRISTM Splints help:

• Protect joints• Reduce pain• Stabilize fi ngers to

improve strength

Do your fi ngers dislocate doing everyday activities? Do you drop things or have trouble grasping objects? Don’t let EDS slow you down. Wear splints to stabilize and protect your fi ngers.

BLOCK HYPEREXTENSION

STABILIZE THUMB

STOP LITTLE FINGER DISLOCATIONS

13

Board of DirectorsSandra Aiken Chack § ChairSusan Hawkins § Vice ChairRichie Taffet, MPH § SecretaryRichard Malenfant, MBA, MPH § TreasurerLara Bloom, International LiaisonHeidi A. Collins, MD, Professional Advisory Network ChairClair Francomano, MDJudge Richard P. GoldenhershFraser C. Henderson, Sr., MDJane MitakidesLinda Neumann-Potash, RN, MN, CBNJohn Zonarich, Esq.

7918 Jones Branch Drive, Suite 300 § McLean, Virginia 22102(703) 506-2892 § (703) 506-3266 Fax § [email protected]

StaffShane Robinson, CAE § Executive DirectorAnita Parker § Senior Director, Resource DevelopmentMary Katherine Saladino, CMP § Director, EventsLauren Sawicki § Coordinator, Foundation ServicesKelsey Secules § Coordinator, EventsErin Price § Coordinator, Resource Development

Creating knowledge, building community, promoting change!

www.ednf.org

http://bit.ly/EDNFfb http://bit.ly/EDNFinsp

http://bit.ly/EDNFtwtr http://bit.ly/EDNFggl

Please remember that EDNF does not offer medical diagnosis or recommend treatment options or physicians. EDNF provides free information and resources to those with Ehlers-Danlos syndromes and to anyone wanting to know more.

GENERAL INFORMATION

14 2015 Conference

Badges

For access to conference sessions and events, we ask that you wear your badges at all times. Please pick up your badges at the registration desk. Your cooperation is appreciated.

Kids & Teens

EDNF will require all parents to sign their Kids & Teens participants in when their children are dropped off, and to sign them out when they are picked up. EDNF will assume no liability for Kids & Teens participants.

Meal Information

Please note that breakfasts and dinners are not provided. The Hilton Baltimore operates The Coffee Bean & Tea Leaf coffee bar from 6 am to 2 pm, the Diamond Tavern restaurant from 6:30 am to 10 pm, and a lobby bar from 5 to 10 pm.

EDNF is pleased to provide: ¡ Thursday — Welcome Reception; ¡ Friday — morning break with snacks and refreshments, lunch, and afternoon break with snacks and refreshments;

General Information ¡ Saturday — morning break with snacks and refreshments, lunch, and afternoon break with snacks and refreshments.

Tax Deductible?

Did you know medical conferences may be tax deductible? According to the Internal Revenue Service’s website (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.”

EDNF Store: Key Ballroom Foyer

The EDNF store is open for business! Located in the foyer near the registration desk and main elevators, please stop by to purchase awareness bracelets

15 and other EDNF merchandise to help keep our mission alive.

Hospitality Suite and Relaxation Lounge: Key Ballroom 12

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

Silent Auction

The Silent Auction will open Thursday at 5:00 pm at the Welcome Reception. Final bids will be placed by the end of the day on Friday, and the winners will be posted on Saturday morning. You must pick up your Silent Auction winnings on Saturday, EDNF will not ship items to you after the conference.

This is an important event, as the auction provides funds for EDNF to offer scholarships to future conferences. The more money we raise at the auction, the more scholarships we can provide! While you bid, please keep our cause in mind. Remember the purpose is to raise money, not just to get a deal. In a charity auction, we should feel good about paying $30 for a $20 item, not about getting that $20 item for $15. If each of us does that, we will raise far more money for

the scholarship fund, and do our part in supporting EDNF and spreading awareness of EDS!

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. You will be able to provide ratings to various conference programming from quality of speakers, to meals and even the venue at http://bit.ly/2015confeval or the Survey icon on the mobile app. We hope you enjoy the event and look forward to receiving your important feedback. Thank you!

Presentations and Handouts

Electronic program materials are accessible through our conference app (which can also be found at http://crowd.cc/2015-ednf) and online before, during, and after the conference on EDNF’s conference website, http://www.ednf.org/conference. The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them. EDNF does not control and is not responsible for the content of presentations.

GENERAL INFORMATION

16 2015 Conference

n 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.

n Be comfortable and wear layers. Meeting room temperatures tend to fluctuate. Wearing layers allows you to warm up and cool down when needed.

n 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.

n 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.

n Raise awareness. One of the most important missions of EDNF 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!

n 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!

n Please turn cell phones off or on vibrate. Thank you for remembering that recording is not allowed in any session unless specifically authorized by speaker.

Other Tips

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� eliminate unpleasant side effects � reduce your risk for serious, and possibly fatal, drug interactions � understand why some drugs may not work for you � identify safer— and sometimes less expensive— alternatives

Call 800-TEST-DNA or visit youscript.com to learn more.

18 2015 Conference

EDSawareness.comWebinars • Support Groups • Team Building

EDS Awareness’ FREE programs are made possible by www.BodySupportStore.com - Offering over 250 products recommended for EDSers, by EDSers.

Body Support StoreComfort and Support Solutions for the EDS Body

EDSawareness.com (Aka. ChronicPainPartners.com)Stop by the EDS Awareness booth to learn about our FREE programs! (Yes, everything is free.)

You don’t have to go through it alone…New local support groups are forming now. Learn more, Live better…Free webinar sessions by EDS experts offered twice per month.

EDS Awareness is a National Network of EDS Support Groups. We provide:

• Local Support Group Directory & Map

• Webinars by EDS experts, including live Q&A

• Articles, resources, public awareness information

• Opportunities to be published or volunteer

• Support for EDSers and their caregivers

• EDSer-recommended products and services

Support Group Program includes:

• Coaching to start, grow, organize and promote your local support group

• Free webpages for each support group

• Connection with experienced Support Group Leaders via online leadership meetings

• Assistance in planning and promoting your local awareness activities

19

Thank You to Our SpeakersOn behalf of the EDS community, the EDNF Board of Directors and staff would like to extend a heartfelt thank you to all of the fantastic speakers at the 2015 conference. This event would not have been possible without their tremendous participation and support, and for that we are truly grateful.

Patrick Agnew, DPM, FACFAS, FACFAP Coastal Podiatry Group

Sama Bellomo Rehabilitation Technologist, Maryland State Department of Education

Lara Bloom EDS International

April Buscher, MT-BC Music Therapist

Heather Butler-Pierce, MEd EDNF Patient Advocate

Pradeep Chopra, MD Director, Pain Management Center, Interventional Pain Management Center of Rhode Island; Assistant Professor (Clinical), Department of Medicine, Brown Medical School, Division of Biology and Medicine and Assistant Professor of Anesthesiology (Adjunct), Boston University School of Medicine

Heidi A. Collins, MD Physical Medicine and Rehabilitation, Memorial Hospital and Health System, South Bend, Indiana


John Ferman EDSawareness.com

Clair Francomano, MD Director, Adult Genetics, Harvey Institute for Human Genetics, Greater Baltimore Medical Center; Director, EDNF Center for Clinical Care and Research

Rodney Grahame, CBE, MD, FRCP, FACP Consultant Rheumatologist University College Hospital and Honorary Professor at University College London in the Department of Medicine; Affiliate Professor of Pathology, School of Medicine, University of Washington

Blair Grubb, MD The University of Toledo Medical Center, Toledo, Ohio

Deanna Hamm EDSawareness.com

Fraser Henderson, MD Chief of Neurosurgery, Doctors Community Hospital, Maryland

SPEAKERS

20 2015 ConferenceKathleen Kane, JD

Petra Klinge, MD, PhD Neurosurgeon, The Neurosurgery Foundation; Faculty member, Brown University; Editor-in-Chief, Interdisciplinary Neurosurgery: Advanced Techniques and Case Management

Mark Lavallee, MD, GSCS, FACSM Program Director, WellSpan York Hospital Sports Medicine Fellowship Program; Co-director, South Bend Sports Medicine Fellowship

Howard Levy, MD, PhD Assistant Professor of Internal Medicine at the McCusick-Nathan F. Institute of Genetic Medicine, Clinical Director of Johns Hopkins Internal Medicine at Greenspring Station, MD

Anne Maitland, MD, PhD Assistant Professor, Department of Otolaryngology Department of Medicine, Clinical Immunology Division Icahn School of Medicine at Mount Sinai; Medical Director, Comprehensive Allergy and Asthma Care / Mast Cell Activation Center of New York

Melanie McManus, CAPE Certified Adaptive Physical Educator, Prince George's County Public Schools

John Mitakides, DDS, DAACP Temporomandibular and Cervicocranial Dysfunction, The TMJ Treatment Center, Beavercreek, Ohio

Kevin Muldowney, PT Muldowney Physical Therapy

Mitzi L. Murray, MD, MA, FACMG Assistant Professor, Department of Pathology and Medicine, University of Washington, Seattle; Geneticist, University of Washington Medical Center

Alan Pocinki, MD, FACP Internal Medicine, George Washington University Medical Center, Washington DC

Jon Rodis

Peter Rowe, MD Director, Chronic Fatigue Clinic at Johns Hopkins Children’s Center; Professor, Pediatrics, Johns Hopkins

Ellen Lenox Smith

Albina Tamalonis, PsyD Therapy Solutions for Change

Maggie Ridgely

Shani Weber EDNF Local Groups and Outreach Liaison

Kathy Zonarich, PT

21

Heidi Collins, MD, ChairPhysical Medicine and Rehabilitation

Patrick Agnew, DPMPodiatry

Peter Byers, MDResearch/Genetics

Edith ChengGenetics/Obstetrics and Gynecology

Joseph Coselli, MD, FACCCardiothoracic Surgery

Joseph Ernest III, MDMaternal-Fetal Medicine

Clair Francomano, MDAdult Genetics

Fraser Henderson, MDNeurosurgery

Tamison Jewett, MDGenetics/Pediatrics

Mark Lavallee, MDSports Medicine

Howard Levy, MD, PhDGenetics/Internal Medicine

Nazli McDonnell, MD, PhDResearch/Genetics

Dianna Milewicz, MD, PhDGenetics/Internal Medicine

John Mitakides, DDS, FAACPTemporomandibular and Cervicocranial Dysfunction

Anna Mitchell, MD, PhDResearch/Genetics

Raman Mitra, MD, PhDCardiology/Electrophysiology

Linda Neumann-Potash, RN, MNNurse Case Manager

Terry Olson, PTPhysical Therapy

Mary Otterson, MD, MSSurgery/Digestive Diseases

Melanie Pepin, MS, CSGResearch/Genetics

Alan Pocinki, MD, FACPInternal Medicine

Elizabeth Russell, MDRheumatology

Uli Schwarze, MDResearch/Genetics

Karen Sparrow, PhDPhysical Therapy

Brad Tinkle, MD, PhDGenetics/Pediatrics

Michael Yergler, MDOrthopedic Surgery/Sports Medicine

Professional Advisory Network

22 2015 Conference

SILENT AUCTION DONORS

EXHIBITORS

Lori AultAnne Breslin

Sandra and April BuscherConor and Kathie Hynes

Rebecca KaysTerri Keyes

Katherine Krizek

Pam MalenfantThe Malleable MomLindaLee Massoud

Carleen RidleySarah’s “Sew Perfect” CraftsSilver Ring Splint Company

23

EDS InternationalSymposium 2016New York City • May 2016

EDNF Mobile App – New This Year!Sponsored by:

Don’t want to carry around your onsite program all day? We have you covered!

This year, the 2015 EDNF Learning Conference materials, schedule, speakers, floor plans, and more are available in thepalm of your hand! Allow push notifications to receive any updates and reminders of upcoming events. Createyour own schedule, take notes, interactwith fellow attendees, and participate in our fun photo-scavenger hunt game, CLICK, for a chance to win a free 2016 Learning Conference registration!

Install your app in three easy steps!1. Download the app:

• Direct Link: https://crowd.cc/s/83N2; or• Search stores for “EDNF” or “Ehlers-Danlos Syndrome”; or• Scan the QR Code to the right

2. Open the app and tap on “2015 EDNF Learning Conference”3. Login: Open the side bar by tapping the top left lines, press “Log in for more features!”

and click “Sign Up” to complete your profile, or simply login through a Social Media Service you already use. Allow push notifications for live updates.

Don’t want to download the app? No problem. All of these Learning Conference materials are available to view and download online at: https://crowd.cc/2015-ednf

Donations to EDNF are critical to our ability to raise awareness and visibility of Ehlers-Danlos syndrome. EDNF 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 indi-vidual, and to whom and where an acknowledgement should be sent.

Thank you for your generous support!

AMOUNT

CREDIT CARD INFORMATION

$25

Yes! I’m making a tax-deductible donation to EDNF to help the mission of Creating Knowledge, Building Community, Promoting Change.

Check attached (payable to Ehlers-Danlos National Foundation) #

$50 $100 $500 $1,000 Other: $

In memory of:

In honor of:

Dedicated to the EDNF Center for Clinical Care and Research

Name

Must match billing information on your credit card:

Address

City State Zip

Phone Email

Acknowledgment to be mailed to:

Please charge my credit card, below, in the amount of $

Name on Card

AmericanExpress MasterCard VISA

Card Number

Exp. Date Card Verification Number

Signature

You can return the completed form to the registration desk in the Key Ballroom Foyer or mail to:Ehlers-Danlos National Foundation § 7918 Jones Branch Drive, Suite 300 § McLean VA 22102703-506-2892 § www.ednf.org.EDNF is a 501(c)(3) non-profit organization with Tax ID Number 38-2813140.

ü

Donation

7918 Jones Branch Drive7918 Jones Branch Drive7918 Jones Branch Drive, Suite 3007918 Jones Branch Drive, Suite 300Key Ballroom Foyer

Dysautonomia International

is a proud supporter of EDNF.

Congratulations on

another great conference!

dy sau tonomia i n te rna t i ona l . o r gf a cebook . com/dy sau tonomia i n te rna t i ona li n fo@dysau tonomia i n te rna t i ona l . o r g

Donations to EDNF are critical to our ability to raise awareness and visibility of Ehlers-Danlos syndrome. EDNF 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 indi-vidual, and to whom and where an acknowledgement should be sent.

Thank you for your generous support!

AMOUNT

CREDIT CARD INFORMATION

$25

Yes! I’m making a tax-deductible donation to EDNF to help the mission of Creating Knowledge, Building Community, Promoting Change.

Check attached (payable to Ehlers-Danlos National Foundation) #

$50 $100 $500 $1,000 Other: $

In memory of:

In honor of:

Dedicated to the EDNF Center for Clinical Care and Research

Name

Must match billing information on your credit card:

Address

City State Zip

Phone Email

Acknowledgment to be mailed to:

Please charge my credit card, below, in the amount of $

Name on Card

AmericanExpress MasterCard VISA

Card Number

Exp. Date Card Verification Number

Signature

You can return the completed form to the registration desk in the Key Ballroom Foyer or mail to:Ehlers-Danlos National Foundation § 7918 Jones Branch Drive, Suite 300 § McLean VA 22102703-506-2892 § www.ednf.org.EDNF is a 501(c)(3) non-profit organization with Tax ID Number 38-2813140.

ü

Donation

7918 Jones Branch Drive7918 Jones Branch Drive7918 Jones Branch Drive, Suite 3007918 Jones Branch Drive, Suite 300Key Ballroom Foyer

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Gain Peace of Mind

ednf 2015 conference program

Documents