2019 Ehlers-Danlos Society Global Learning Conference Nashville

EDS Global Learning Conference Nashville • July 30 – August 1, 2019
Professionals Day • August 2, 2019

Sheraton Music City Hotel
777 McGavock Pike, Nashville, TN 37214, USA

THANK YOU ALL FOR A WONDERFUL CONFERENCE!

Presentations from Nashville are starting to be available below.

The schedule (changes may not have been reflected here) can be seen here, and the speakers here.

Please watch for registration soon for other events on our upcoming events page.

Get our official event app,

Get the most out of the app and have a more productive experience!

1

NAVIGATE the event agenda and logistics, even without Wi-Fi or data. Access useful information like ridesharing and local attractions through the Community Board

2

NETWORK effectively. Plan whom to meet by exploring attendee profiles and sending out messages

3

PARTICIPATE in event activities through session likes, comments, ratings, live polling, tweeting, and more

For Blackberry or Windows phone, click here
For feature details, visit Whova

QUESTIONS?

For questions about the conference, please get in touch with our Events Director, Stacey Simmonds. If you’re interested in sponsorship opportunities, please get in touch with our Development Director, Carissa Hocevar.

CONFERENCE SPONSORS

Platinum Sponsor

 

https://acertx.com/

Acer is a pharmaceutical company focused on the acquisition, development and commercialization of therapies for patients with serious rare and ultra-rare diseases with critical unmet medical need. Acer’s late-stage clinical pipeline includes two candidates for severe genetic disorders: EDSIVO™ (celiprolol) for vascular Ehlers-Danlos syndrome (vEDS), and ACER-001 (a fully taste-masked, immediate release formulation of sodium phenylbutyrate) for urea cycle disorders (UCD) and Maple Syrup Urine Disease (MSUD). There are no FDA-approved drugs for vEDS and MSUD and limited options for UCD, which collectively impact approximately 7,000 patients in the U.S. Acer’s product candidates have clinical proof-of-concept and mechanistic differentiation, and Acer intends to seek approval for them in the U.S. by using the regulatory pathway established under section 505(b)(2) of the Federal Food, Drug, and Cosmetic Act (FFDCA) that allows an applicant to rely at least in part on third-party data for approval, which may expedite the preparation, submission, and approval of a marketing application.

Gold Sponsor

Silver Ring Splint logo

https://www.silverringsplint.com/

In 1974, occupational therapist Cynthia Garris was forced to take a new look at splint therapy – in that year, she was diagnosed with Rheumatoid Arthritis. While plastic splints were adequate for treating short-term trauma, they were not an ideal solution for lifetime wear. In 1985, she set out to design and manufacture a new series of splints that were both more effective and more attractive than the splints then in use. In the process, she revolutionized splint therapy.

Wearing SilverRing™ Splints removes the stigma of splinting and increases patient compliance. Patients experience positive reactions from others which improves their perspective on treatment.

Whether they need finger stability for hand-intensive work or for everyday tasks like cooking and holding a pencil, thousands of people have made SilverRing™ Splints a valued part of their everyday lives. SilverRing™ Splints encourage complete patient well-being, medically effective hand therapy and a positive self-image.

Gold Sponsor
Thrive Tape logo

https://www.thrivetape-eds.com/

THRIVE “FAR INFRARED” KINESIOLOGY TAPE is a new product to the market which was designed to support muscles and joints with the added benefit of targeted pain relief* assisting in the recovery from most common injuries.* Kinesiology Taping is a natural drug-free rehabilitative technique which is applied to tired, sore and supports injured muscles, joints, and tendons. The proper taping technique will help stabilize the injured affected area of the body allowing for
increased range of motion.

A key feature of our tape is if you are not able to follow the taping instructions exactly by yourself, or if you are not able to be taped by a therapist or friend, you only need to apply the tape over the area of soreness or discomfort to receive benefits.

Thrive “Far Infrared” Kinesiology Tape is latex free, water resistant, and can be worn in the shower, the beach, and for any activity. Our tape can be worn 24 hours a day.

OUR GOAL IS TO HELP YOU THRIVE!

LIVE LIFE AND PUSH BOUNDARIES

Please visit our web site www.thrivetape-EDS.com

Gold Sponsor
Backpack Health logo

https://www.backpackhealth.com/

Backpack Health is a health tech company building tools to help people manage their health details, care and communication. We believe everyone should be able to track their own health comprehensively, and do the same for the people they care about – no matter what their health concerns are, no matter what family means to them, and no matter what language they speak – all in one place.

We’re a group of passionate, creative people building innovative tools to help people better manage their health details, care and communication.

Our mission: We’re making it easy for everyone to access, own and control all of their health information to support better health for themselves, their loved ones, their communities, and for us all.

Our journey: The inspiration behind Backpack Health was pretty simple: We shared similar problems, and we wanted to solve them.

Here’s the thing: Your health information belongs to you. You have a legal right to it, and that means with the right tools, you can make the most out of your own health narrative. Our goal is to help you do just that.

Bronze Sponsor

Dysautonomia International logo

http://dysautonomiainternational.org/

Dysautonomia International is a 501(c)(3) non-profit organization run entirely by volunteers. Our volunteers include patients, family members, friends, physicians, researchers, and other health professionals. We have a Board of Directors, a Medical Advisory Board, and a Patient Advisory Board, as well as many other volunteers. Our main offices are in New York and Maryland, but we have volunteers all across the US and in several other countries.

We help organize events around the globe each October for Dysautonomia Awareness Month. We hold a large annual conference each summer during which dysautonomia patients, family members and experts from around the world to join together for a weekend of educational programming, fun social events, and grassroots dysautonomia advocacy. We educate medical professionals about autonomic disorders.

We fund medical research on POTS and work with researchers to speed up the pace of discovery. One theme that overlaps with all of our work is the need to involve patients in the process. We believe that patients who live with a chronic illness are great untapped source of knowledge. Throughout the year, we connect patients and families with one and other through email, social media and in-person events. We empower patients to become their own best advocate, and provide a platform for those who want to advocate for others.

Bronze Sponsor
 
Logo of MindBodyEDS

https://www.mindbodyeds.org.uk/

Mind Body EDS aims to be at the forefront of making a difference every day to the lives of people with Ehlers-Danlos syndromes and their families. We are committed to having a positive impact for everyone affected by Ehlers-Danlos syndromes, to ensure each individual’s health outcome is neither determined nor disadvantaged by their personal means.

We confront Ehlers-Danlos syndromes on all fronts – through advocacy and awareness, together with financial and research support – to help save lives and improve individual sufferers’ quality of life.

Our vision is for a world where diagnosis of Ehlers-Danlos syndromes no longer takes decades, in order to prevent the condition from causing disabling and life-threatening complications.

Bronze Sponsor

NYIT logo

https://www.nyit.edu

If you or a loved one suffers from Ehlers-Danlos syndrome (EDS), you need to find a comprehensive treatment center that will empower you and improve your well-being. At this center, you’ll learn about treatment options for EDS, and discover how EDS patients can improve their quality of life.

Our EDS program is available at the NYIT Academic Health Centers. As a progressive collaboration among physicians and health care professionals, we work to alleviate the physical limitations and debilitating symptoms of EDS.

Our integrated team works together across specialties to offer a variety of services to help evaluate and design individualized treatment programs.

Bronze Sponsor
Logo of The Mastocytosis Society

https://tmsforacure.org/

The Mastocytosis Society is a 501(c)3 nonprofit organization dedicated to supporting patients affected by Mastocytosis or Mast Cell Activation Diseases as well as their families, caregivers, and physicians through research, education, and advocacy.

The Mastocytosis Society, Inc. (TMS) was founded in 1995 by Bill Abbottsmith, Linda Buchheit, Olive Clayson, Iris Dissinger, Bill Hingst, and Joe Palk. The first support group meeting was held in Baltimore at the Inner Harbor in 1994 and was attended by Linda Buchheit and Bill Hingst. The second meeting was held the following year at Linda Buchheit’s home in Ohio. Fourteen members attended that year. Little did they know how fruitful their efforts would be and what a lifeline they would become as more and more patients joined each year.

Supporting Sponsor
CSF logo

https://www.dmorthotics.com/

DM Orthotics is a world leading creator of medical rehabilitation and sports performance products.

We provide elastomeric fabric, dynamic movement orthoses to over 25 countries, helping to improve the lives of people who face a range of physical challenges. We are dedicated to the research, development and evolution of our products, with the aim to constantly improve the lives of the people who use them.

Everything we create undergoes the highest levels of clinical and scientific testing to ensure that it works at an optimal level for our customers.

Our design and production process incorporates state-of-the-art technology with traditional tailoring. We take the most successful elements from new technology and traditional tailoring to produce individually custom-made dynamic movement orthoses that are unmatched in their function and quality.

We work towards a single goal – to improve function and encourage independence for the user.

Supporting Sponsor
Avazzia

http://avazzia.com/

BEST technology, developed by Avazzia’s CEO Tim Smith, produces microcurrent electrical impulses, which are transmitted by electrodes in the device through the skin to communicate with the body’s nervous system. BEST products are controlled by a high-performance microcomputer chip, which uses Avazzia proprietary software

These hand-held devices are FDA-cleared for the symptomatic relief and management of chronic, intractable pain and adjunctive treatment in the management of post-surgical and post-traumatic pain (available by prescription only). These noninvasive neuro-stimulation devices allow patients to take control of their pain management.

Avazzia BEST (Bio-Electric Stimulation Technology) products feature a tissue reaction response indication, making them superior to traditional TENS units. BEST products work on different neural paths than a traditional TENS.

Healthcare providers – including physicians, dentists, chiropractors, physical therapists and athletic trainers – use these devices for their own pain management and with their patients.

Patients use Avazzia BEST technology to manage pain connected with chronic and acute pain; dental patients use Avazzia products to manage pain after tooth extractions; athletes – including college and professional athletes – use Avazzia BEST products to reduce pain associated with rehab and after injuries.

Avazzia has strategic alliances with research foundations and medical schools in the United States, India, Malaysia, Romania, and Taiwan and to perform clinical studies with BEST products. Avazzia has relationships with domestic and international distributors, clinics and professionals to market its products.

Avazzia was founded in January 2004 and incorporated in Texas in May 2004. All Avazzia BEST products are manufactured and serviced at Avazzia corporate headquarters in Texas.

SCHOLARSHIPS

Thanks to the generosity of donors, The Ehlers-Danlos Society provided a number of full-conference registration scholarships based on demonstrated need (a value of $299 each) to the 2019 EDS Global Learning Conference, July 30–August 1, in Nashville. Your donation to the scholarship fund is very welcome, and vital to the sustained growth of the scholarship program. Please choose “Conference Scholarships” from the drop-down menu labelled “Apply My Donation To” — and help someone with EDS come to a conference.

PRESENTATIONS

Below, listed alphabetically by presenter name, is available information from the 2019 Nashville conference. There are PDFs of slides used, there are videos of presentations, and there are transcriptions in PDF. As each becomes available, they will be added below. Please remember that these presentations are provided for your personal, educational use. 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.

An Introduction to EDS, HSD, and Gene Testing

EDS 101 • Brad Tinkle

HSD 101 • Alan Hakim

Annie Barlow

Maggie Buckley, MBA

Newly Diagnosed: Tips and Tricks

Maggie Buckley & S-Jo Ritchie

Freshman Orientation: Welcome to the Herd

Nigel Burrows, MBBS, MD, FRCP

Peter H. Byers, MD & Sherene Shalhub, MD, MPH, FACS

Vascular Risks in EDS

Daniel J. Clauw, MD

Diagnosing & Treating Pain Based on the Underlying Mechanism

Dr. Helen Cohen

Dislocations & Subluxations

No Brain, No Gain

Larry Constant, Jr.

Inge De Wandele, PT, MT, PhD

Physical Therapy Management

Jeannie Di Bon, MA, PMA-CPT

How Pilates and Movement Can Help My EDS/HSD Symptoms

Junior Zebras: Let’s Move!

Rodney Grahame CBE, MD, FRCP, FACP, FRSA

What a Patient with EDS Has the Right to Expect From Their Doctor & Why Are They Not Receiving It?

Fraser C. Henderson, Sr., MD

The Autonomic Nervous System, Dysautonomia & Its Relationship to Craniocervical Instability

Jessica Huddleston, MA, MCJ, PhD

EDS/HSD & Children’s Mental Health

Rohith Jesudas, MD

Bleeding & Bruising in hEDS

Netali Levi, DClinPsy

Mental & Emotional Wellbeing in EDS

Howard P. Levy, MD, PhD

Anne Maitland, MD, PhD

Strike 3! The Disturbed Axis of Mast Cells, Nerves, and Connective Tissue

Kevin Muldowney, PT

The Muldowney Protocol

Alan G. Pocinki, MD, FACP

Evaluation & Management of Fatigue in Patients with EDS and HSD

Satish R. Raj, MD, MSCI, FRCPC & Kate Bourne, BSc, MSc (cand)

Autonomic Dysfunction and EDS: An Introduction for Patients

Maggie Ridgely

Navigating a Social Life with EDS

Ann Rodiger, M.AmSAT

The Alexander Technique

Jonathan Rodis & Kathleen L. Kane

Applying for Disability

Leslie Russek, PT, DPT, PhD, OCS

Physiotherapy Management for Children

Dr. Chad Shepherd

EDS, Trauma, and PTSD

Ellen Lenox Smith

Brad T. Tinkle, MD, PhD

Bone Fragility in EDS

Child Protection & EDS

Jordan Tishler, MD

Medical Cannabis: What Is It Good For?

Anthony Vandersteen, MA, PhD, BM, FRCP

Living With a Rarer Type of EDS

Shani Weber, MS

Coping with School with EDS/HSD