EDS Resources Site

John Ferman & Deanna Hamm [email protected]

“Easy Steps to Start a Local Group – Empowered for Support, Education

and EDS Awareness”

8-14-2015

WHO are we?

• Deanna has EDS / John is her father – She leads the EDS group in Cleveland, OH (medical background)

• John’s previous wife Carol died with undiagnosed EDS – Cincinnati, OH / Retired (I.T. background) / Full time volunteer

Links:

http://www.chronicpainpartners.com/supportgroups/ http://www.chronicpainpartners.com/my-wife-had-eds-and-did-not-know-it/

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http://www.chronicpainpartners.com/supportgroups/

http://www.chronicpainpartners.com/my-wife-had-eds-and-did-not-know-it/

















Deanna Carol John

2015 EDNF Learning Conference www.edsawareness.com

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2015 Nominated for her Volunteer work with EDS Awareness

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EDS – Is it RARE or “RARELY DIAGNOSED”?


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Current Poll: How long until you received a proper diagnosis for EDS?

•>20 years (51%, 1,562 Votes) •10-20 years (18%, 537 Votes) •2-5 years (13%, 409 Votes) •5-10 years (13%, 294 Votes) •1 year (5%, 157 Votes)

Total Voters: 3,059 . Source: EDS Awareness.com web site .

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EDS Awareness Program

Mission - To assist and encourage support groups to organize and spread knowledge about EDS in their local communities


8/14/2015


Mission - To assist and encourage support groups to organize and spread knowledge about EDS in their local communities - To help EDSers locate valuable information, continue to learn, and create resources to share with their EDS peers


8/14/2015


Mission - To assist and encourage support groups to organize and spread knowledge about EDS in their local communities - To help EDSers locate valuable information, continue to learn, and create resources to share with their EDS peers - To educate and inform local medical practitioners and the public about Ehlers-Danlos Syndrome


8/14/2015


Mission - To assist and encourage support groups to organize and spread knowledge about EDS in their local communities - To help EDSers locate valuable information, continue to learn, and create resources to share with their EDS peers - To educate and inform local medical practitioners and the public about Ehlers-Danlos Syndrome - To promote EDS awareness on a local and national level -

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www.edsawareness.com 8/14/2015

What is our Program?

EDS Awareness is a national network of support groups & educational resource: Support Group Directory & Map

Webinars, resources, articles, links

Public awareness information

Support for EDSers and their caregivers

EDSer-recommended literature, products

& services

Sponsored by www.BodySupportStore.com

EDS Awareness provides the

following FREE Programs:

Webpages & coaching to start, grow, organize and publicize your local support group

Connect with experienced EDS Support Leaders via online meetings

Educational webinars

Assistance in planning & promoting your local awareness activities

Opportunities to get involved: e.g. write or post articles, share links & information or help newly-diagnosed EDSers; New ideas always welcomed!


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http://www.bodysupportstore.com/

EDS Awareness Web Site


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“Easy Steps to Start a Local Group – Empowered for Support, Education and EDS Awareness”

Questions: - Who is here today for their first conference? - Who participates in an EDS Facebook group? - Who participates in the “Inspire” discussion board? - How many of us like to have a “Meet-up” or get-together? - Who is in a local support group that meets regularly? - How many of us are in support groups that participate

in educational & EDS Awareness activities?


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Benefits of participating in support groups

• Feeling less lonely, isolated or judged • Gaining a sense of empowerment and control • Improving your coping skills and sense of adjustment • Talking openly and honestly about your feelings • Reducing distress, depression, anxiety or fatigue • Developing a clearer understanding of what to expect with

your situation • Get practical advice/information about treatment options. • Compare notes about resources, such as local doctors and

alternative options • Can provide friends, answers, validation, … also easy

to participate and fun


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EDS Support Group Map

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Cleveland EDS Group Pages


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Promote your Meeting Schedule


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Add a Map to your Meeting Page


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Group Meeting Activities & Programs

Social activities • “Meet-ups” to get to know one another


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Alaska Hope EDS


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Alabama EDS Support Group


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Social activities • “Meet-ups” to get to know one another • Adult and Children group activities


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Alabama Children’s Get Together


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Social activities • “Meet-ups” to get to know one another • Adult and Children group activities • Picnics and birthday parties


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EDS Picnic in Arizona


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Social activities • “Meet-ups” to get to know one another • Adult and Children group activities • Picnics and birthday parties Educational programs • Invite a doctor to speak at your meetings

2015 EDNF Learning Conference

www.edsawareness.com 25 8/14/2015

Alabama Group Exercise Demonstration


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Social activities • “Meet-ups” to get to know one another • Adult and Children group activities • Picnics and birthday parties Educational programs • Invite a doctor to speak at your meetings • A member could discuss how they handle issues


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Rhode Island Member Presenting a Topic


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Social activities • “Meet-ups” to get to know one another • Adult and Children group activities • Picnics and birthday parties Educational programs • Invite a doctor to speak at your meetings • A member could discuss how they handle issues • Listen/discuss one of our Free 2X monthly


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2X Monthly Educational Webinars


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Partial list of our speakers Webinar replays available on our website!

• Dr. John Mitakides Dr. Brad Tinkle • Dr. Pradeep Chopra Dr. Derek Neilson • Dr. Patrick Agnew Dr. Kenneth Goldschneider • Kathleen Kane, ESQ Dr. Hal Dietz • Dr. T. C. Theoharides Dr. Ron Jaekle • Dr. Manu Sood Dr. Forest Tennant • Mike Healy, PT Dr. Mark Lavallee • Dr. Howard Epps Jan Dommerholt, PT • Dr. Henry Burkholder Dr. Peter Byers • Dr. Subinoy Das Dr. Diana Lebron • Dr. Shweta Dhar Kevin Muldowney, PT • Dr. Anne Maitland Dr. Alan Pocinki • Frank Gargano, PT Dr. Peter Rowe • Eric Palmer Ellen Lenox Smith


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Social activities • “Meet-ups” to get to know one another • Adult and Children group activities • Picnics and birthday parties Educational programs • Invite a doctor to speak at your meetings • A member could discuss how they handle issues • Listen/discuss one of our Free 2X monthly • Manage your list of preferred doctors by discipline


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Social activities • “Meet-ups” to get to know one another • Adult and Children group activities • Picnics and birthday parties Educational programs • Invite a doctor to speak at your meetings • A member could discuss how they handle issues • Listen/discuss one of our Free 2X monthly • Manage your list of preferred doctors by discipline • Create a periodic newsletter about group activities


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Dallas EDS Newsletter


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Community EDS awareness Activities

Local programs • Participate in a school “Service Fair”


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School “Volunteer Service Fair”


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Local programs • Participate in a school “Service Fair” • Set up a display in a local library or YWCA


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EDS Display at a Local library or YWCA


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Local programs • Participate in a school “Service Fair” • Set up a display in a local library or YWCA • Set up a table in a hospital cafeteria


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Table in a Hospital Cafeteria


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Local programs • Participate in a school “Service Fair” • Set up a display in a local library or YMCA • Set up a table in a hospital cafeteria • Set up a table at a local church “Health Fair”


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Table at a Local Church “Health Fair”


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Asheville NC Group- Southeast “Pain Symposium”


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Local programs • Participate in a school “Service Fair” • Set up a display in a local library • Set up a table in a hospital cafeteria • Set up a table at a local church “Health Fair” • Participate in local EDS or EDS-Chiari walks


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Cincinnati EDS-Chiari Walk


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Chiari Walk in Charlotte NC


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EDS - Chiari Walk in Denver Co


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Presentations/Radio/TV • Present a local “adult education” program


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Presentations/Radio/TV • Present a local “adult education” program • Present to local community groups: PTA, sport

coaches, Civitan, nurses, women’s groups…


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Community EDS Presentation


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Presentations/Radio/TV • Present a local “adult education” program • Present to local community groups: PTA, sport coaches,

Civitan, nurses, women’s groups … • Publish an article in a local newspaper


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Cincinnati Enquirer Article


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Civitan, nurses, women’s groups … • Publish an article in a local newspaper • Get interviewed by a local Radio or TV station


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Dayton Ohio Radio Broadcast


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Civitan, nurses, women’s groups … • Publish an article in a local newspaper • Get interviewed by a local Radio or TV station • Request a State Proclamation and publicize it


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Michigan EDS Proclamation


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Rhode Island EDS Support Group Proclamation


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Civitan, nurses, women’s groups … • Publish an article in a local newspaper • Get interviewed by a local Radio or TV station • Request a State Proclamation and publicize it • Visit your state congressperson and discuss EDS


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New England Proclamation Presentation


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Other EDS Awareness Opportunities • Wear your EDS Awareness Zebra T-Shirt


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EDS Awareness Zebra T-Shirt


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Other EDS Awareness Opportunities • Wear your EDS Awareness Zebra T-Shirt • Promote EDS awareness at a local grocery store


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Other EDS Awareness Opportunities • Wear your EDS Awareness Zebra T-Shirt • Promote EDS awareness at a local grocery store • Promote EDS awareness at a local sporting event


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Columbus local sporting event


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Other EDS Awareness Opportunities • Wear your EDS Awareness Zebra T-Shirt • Promote EDS awareness at a local grocery store • Promote EDS awareness at a local sporting event • Promote EDS awareness at a local parade


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Other EDS Awareness Opportunities • Wear your EDS Awareness Zebra T-Shirt • Promote EDS awareness at a local grocery store • Promote EDS awareness at a local sporting event • Promote EDS awareness at a local parade • Promote EDS awareness at a local “Walk” or “Run”


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Columbus Marathon Promoting EDS Awareness


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Other EDS Awareness Opportunities • Wear your EDS Awareness Zebra T-Shirt • Promote EDS awareness at a local grocery store • Promote EDS awareness at a local sporting event • Promote EDS awareness at a local parade • Promote EDS awareness at a local “Walk” or “Run” • Participate in related awareness events


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Other Related Awareness Events


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Other EDS Awareness Opportunities • Wear your EDS Awareness Zebra T-Shirt • Promote EDS awareness at a local grocery store • Promote EDS awareness at a local sporting event • Promote EDS awareness at a local parade • Promote EDS awareness at a local “Walk” or “Run” • Participate in related awareness events • Host a Local Doctor Conference


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Cincinnati EDS-Chiari Conference


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New EDS Awareness Brochure


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New EDS Awareness Brochure


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EDS Awareness Banner


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Cleveland Support Group Posters


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Summary


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Summary Goals of the EDS Awareness team: • Increase the awareness of EDS until no one has to

struggle without diagnosis. So no one feels isolated and disconnected from their community.


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• Assist local groups to grow stronger and become more visible in their communities.


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• Link everyone to the most recent EDS educational information through articles and webinars.


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• Make Ehlers-Danlos Syndrome a “house-hold” word


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• Make Ehlers-Danlos Syndrome a “house-hold” word • Tell someone about EDS today and everyday!


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• Make Ehlers-Danlos Syndrome a “house-hold” word • Tell someone about EDS today and everyday! • If you would like to talk to us more:

– Stop by the EDS Awareness Booth – Meet in the lobby at 7:00 pm tonight to discuss EDS Awareness


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EDS Awareness Social Media sites Main web site – www.edsawareness.com a.k.a. – www.chronicpainpartners.com

Facebook – www.facebook.com/edsawareness1

Twitter – www.twitter.com/edsawareness1

Youtube – www.youtube.com/edsawareness1

Pinterest – www.pinterest.com/edsawareness

Store – www.BodySupportStore.com

G+ - https://plus.google.com/communities/103969521875897628640


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http://www.edsawareness.com/

http://www.chronicpainpartners.com/

http://www.facebook.com/edsawareness1

http://www.twitter.com/edsawareness1

http://www.youtube.com/edsawareness

http://www.pinterest.com/edsawareness


https://plus.google.com/communities/103969521875897628640

EDS Awareness Booth

• Stop by our booth to take your photo with the zebras • Buy a Zebra shirt: only $10.00 S–XL ($15.00 2XL–4XL) • Enter the raffle for 5 New Books and 10 daily prizes • Pick up a new free EDS Awareness brochure & wallet card • View video displaying Webinar speakers & group activities • Listen to detailed “EDS Support Group” webinar on our site • Check out BodySupportStore.com products & Essential Oils • Talk to those wearing “Ask me about EDS Awareness” tags • Look for “EDS Support Group Leaders” wearing buttons • Meet us in the lobby at 7:00 pm tonight to discuss EDS Awareness


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KATHY - Newest Member of our EDS Awareness Team


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We are newly weds 12-6-2014

8/14/2015

8/14/2015 2015 EDNF Learning Conference www.edsawareness.com

Thank you for your attendance

Special thanks to all of our support group leaders and members for their dedication!

Contact us at [email protected]

Sponsored By: www.bodysupportstore.com

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EDS Resources Site

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Transcript of EDS Resources Site