Lead EDS

2019 EDS Leadership Conference

The mission of our EDS Leadership program is to train and support existing and potentially future leaders to help their members with managing EDS and related conditions.

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About LEAD EDS

Building and supporting well educated, confident leaders. The program recognizes the important role of EDS leaders who help connect, support and educate their members. This membership offers leadership development programs and resources designed to serve local support groups, Facebook and advocacy groups at all stages of their development.

“Academy for Education & Training Excellence”

Leadership. Education. Advocacy. Dedication. Empowerment. Drive. Support.

Our Purpose

Leadership, Advocacy, Education & Dedication for those affected by Ehlers-Danlos syndromes (EDS) and related conditions.

Our Goal

Empowering Responsible Patient Advocacy, Facilitating Positive Healthcare Partnerships & Fostering Self-efficacy

WHY Ehlers-Danlos Syndromes Leadership Training and Support

  • Many with EDS want to help others who have similar conditions
  • Most with EDS have no organizational experience or training
  • Group leaders have good days and bad days and need help
  • EDS resources are rarely known and generally unavailable
  • Legal concerns need to be understood to protect all

Our Speakers and Agenda

(Note for the hearing impaired the live steaming event will have Closed Caption available)

 

Welcome and Introduction

John Ferman discusses our plans and vision as a community where those affected by Ehlers-Danlos syndromes and related conditions can access reliable support and resources via knowledgeable, experienced. successful leadership.

 

 

 

EDS the Invisible medical condition

 Dr. Linda Bluestein discusses the medical conditions related to Ehlers-Danlos Syndromes and associates conditions, 

 

 

Setting up and managing EDS Support Groups

Andrea Julian discusses "Setting up and managing EDS Support groups"

 

 

 

Organizing and managing your Facebook and Social Media

Maria Dastur discusses "Organizing and managing your Facebook and Social Media"

 

Mandy Harvey Interview

Mandy Harvey interview – John Ferman

Support group member advocacy 

Amanda Aikulola Discusses "Support group member advocacy"

 

Setting up and managing Children's Support groups

Cathy Rouhier discusses "Setting up and managing Children's Support groups" 

 

Business and social guidelines for Support groups  

 Kendra Neilsen Myles discusses "Business and social guidelines"  

 

Panel Discussion

Panelists answer questions from the audience 

 

Mandy Harvey program

Mandy Harvey entertainment program

EDS Leadership future plans

John Ferman discusses our future community programs to help those affected by Ehlers-Danlos syndromes and related conditions to access reliable support and resources via knowledgeable, experienced, successful leadership.

 

Sponsors & Partners

Thanks to our sponsors & partners for their support!

More About Our Speakers

Event Speakers & Special Guests

Kendra Neilsen Myles, CHES, BCPA
Kendra Neilsen Myles, CHES, BCPA

Executive Director & Founder of EDS Wellness, Inc.

Global public health and wellness-minded foundation focused on integrative & research-based SOLUTIONS, and mind-body-spirit care for individuals with ALL hypermobility related disorders. 

John E Ferman
John E Ferman

Co-Founder of Chronic Pain Partners 501 (c)(3) and the EDS Awareness program

Program Director for over 85 EDS Educational webinars and the EDS Physician CME Educational program. Helped to form and/or support over 120 EDS Support Groups worldwide.

 

 

Mandy Harvey
Mandy Harvey

Mandy Harvey is an award-winning singer, songwriter, and inspirational speaker who lost her residual hearing at the age of nineteen from EDS.

Linda Bluestein, M.D.
Linda Bluestein, M.D.

EDS Awareness and the EDS Physician CME program Medical Adviser

Also the EDSWellness Board Member, Founder of Wisconsin Integrative Pain Specialists

Cathy Rouhier
Cathy Rouhier

Teen group leader for the Dayton group

Cathy is the teen group leader for the Dayton group. She works as a Literacy Coach for Summit Academy in Dayton. Before becoming Literacy Coach, Cathy was an intervention specialist in a K/1 classroom for four years.

Andrea Julian
Andrea Julian

Functional Training Specialist and Youth Mentor

Andrea uses her experience as an EDS patient, parent and caregiver to serve on the board of directors of EDS Awareness and as Director of the Dayton Zebras.

Maria Dastur, M.B.A.
Maria Dastur, M.B.A.

DC/MD/VA Regional Mast Cell Disease Support Group leader for 4 years

During this time, she grew her support group and Facebook group to over 400 members.

Amanda Aikulola LPN
Amanda Aikulola LPN

DYSAUTONOMIA SUPPORT NETWORK, Johnston, RI President / Executive Director, Jun 2016 – Present

Amanda has combined her professional and personal experience as an advocate and proven leader.

Get in Touch

We are here to help

  • Many with EDS want to help others who have similar conditions
  • Most with EDS have no organizational experience or training
  • Group leaders have good days and bad days and need help
  • EDS resources are rarely known and generally unavailable
  • Legal concerns need to be understood to protect all

3 + 3 =