Lead EDS
2019 EDS Leadership ConferenceThe 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.
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
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
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 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.
EDS Awareness and the EDS Physician CME program Medical Adviser
Also the EDSWellness Board Member, Founder of Wisconsin Integrative Pain Specialists
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
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.
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
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