“EDS Awareness Month” Activities in May – – and all year long!

How can YOU participate?  

  • Add your awareness activity to the list.

  • Get involved with similar activities.  

  • Join our team of support groups.  

  • Click here for more information about forming support groups.

  • Click here for information about your EDS awareness shirt.
  • Click here for information about the EDS Awareness brochure.

 

EDS awareness logo jpeg HI-RES (1)

 

____________________________ _____________________________________________________

2017 Awareness Events:

Our EDS Awareness Support Groups will be reporting on their 2017 awareness events on this page.  If your group wants to be included, please send a summary of your activities to us at info@edsawareness.com and we will post them on this page.

 

Hoofbeats 5K 2017 Saturday June 3, 2017 9:00 AM NHTI – Concord’s Community College 31 College Drive | Concord, NH 03301 Day of Race Registration: 7:30AM

Click here to signup on line.

Click here for the Hoofbeats flyer

________________________________________

Tri-State EDS Support Group Activities in WV

Ashton Nesmith-Kochera

I wanted to touch base about my Tri-State EDS Support Group activities here in WV. We started in person support group meetings at WVU-East Healthcare last March and within one year we basically are in the verge of outgrowing our space. The amount of people who have joined has surpassed everything I ever expected. Our only FB group just hit 100 members and we have about 50 active in person support group members with 25 in attendance the past two months. We even have caught the attention of physicians & med students who have also attended. Myself and three other group members went to NIH and Rare Disease Week on Capitol Hill. After meeting with Congressmen and Senators I left more motivated than ever.

Here are a few pics of our group advocating in DC during Rare Disease Week:

Congressmen Alex Mooney of WV

Senator Joe Manchi

NIH Display

 

 

 

 

 

____________________________ _____________________________________________________

_________________________

 Ehlers Danlos Zebras at the Dayton Holistic Symposium

_____________________________

2016 Awareness Events:

Our EDS Awareness Support Groups will be reporting on their 2016 awareness events on this page.  If your group wants to be included, please send a summary of your activities to us at info@edsawareness.com and we will post them on this page.

.

_______________________________________________________________________

EDS / Chiari Awareness Walks in May and June 2016

.
csf logo
This year we are partnering again with the Chiari CSF Foundation (www.CSFinfo.org)  to conduct nationwide walks for EDS and Chiari Awareness.
Many of our 100+ EDS groups have members with Chiari and some have participated in Chiari walks in the past. Wear your zebra shirt for this walk.  See more information at  http://csfinfo.org/csf-unite-night/

.

.

.

.

_______________________________________________________

Free EDS Awareness Educational Webinars – Twice/month

Remember to check out our free, live webinars on the 1st and 3rd Tuesdays of each month.  See upcoming speakers and instructions to attend or watch video replays at:

http://www.chronicpainpartners.com/webinars/

____________________________________________________________________

 

Dayton Zebras Conquer Ehlers-Danlos, Chiari Walk Across America 5K

dayton-walk-2016_1dayton-walk-2016-640x427

 

 

 

 

On September 17, 2016 the Dayton Zebras participated in the Conquer Chiari Walk Across America 5K in Beavercreek, OH. This year the Dayton Zebras set up a selfie booth and EDS awareness table. We reached many people that had never heard of EDS. We were also able to reach people that did not know of a connection between EDS and Chiari.  Some cried as they read the symptoms and realized they may have found the answer they were searching for.  Thankfully, we had a great team there to offer hope and guidance. The Selfie booth was also a huge success and so much fun! I am honored that our group was able to set up and be a part of this.  The Beavercreek Chiari Walk Across America 5K brought in over $20,000 for Chiari research this year.

___________________________________

Presentation & Round Table Discussion with children with EDS

Thank you all for taking the time to come to UIC College of Medicine on 9/21/2016 to let us learn about EDS. We all really enjoyed the talk and learned how to diagnose this collagen disorder!

We met children with Ehlers-Danlos-Syndrome to hear their stories.
Members of the EDS Chicago Support and Awareness group presented the main diagnostic
features of this collagen disorder, including Beighton score, and answered questions.
univ-of-ill-jpg_3
univ-of-ill-jpg_2
univ-of-ill

 

 

 

 

 

 

 

 

 

 

 

___________________________________

5k Run/Walk Barribgton IL.

My name is Laura Kayler, my friend, Sam, and I started a non-profit organization called, James Journey, in memory of my brother, James Kayler. He lost his battle to Vascular EDS (Type IV) in January 2014. Please join us in our 5k Run/walk in Barribgton IL. on August 7, 2016.

Chicago walk and run

 

 

 

 

 

 

 

 

 

 

 

 

_____________________________________________________________________

Georgia EDS Awareness Month Proclamation

Click here for the Grorgia EDS Awareness Month Proclamation 

God used Amy Coleman to encourage people in Him and His Word–even when she was struggling so horribly, she was reaching out to others and encouraging them.  God also used Amy to bring awareness to EDS (Ehlers Danlos syndrome). Even at her funeral service, awareness was given due to the fact that a year ago, January 2015, due to Amy’s research and writing a proclamation for Governor Sonny Perdue and the Georgia Legislature, May is now EDS Awareness month in Georgia.

They also approved a certain amount of Georgia’s money to go for research for EDS.

Reported by Martha Hutcheson – North Georgia EDS Support Group

____________________________________________________________________

Reported by: Justin & Nancy

 

____________________________________________________________________

Alaska Ehlers-Danlos Syndrome Awareness Month Coloring Competition.
alaska coloring contestStart Date: May 1, 2016 at 12:00 am
End Date: May 31, 2016 at 11:59 pm
Rules: Attached you will find a picture of a zebra bust that was designed and drawn by the artist Katie Zamudio, Doodlebug Coloring Books. Starting May 1, 2016 at 12:00 am until May 31, 2016 at 11:59 pm, all coloring images will need to be submitted via email to AlaskaHopeEDS@gmail.com or to my face book messenger. On June 1st, the images will be reviewed, and the winner will be announced within the week following. The winner will receive a prize from Doodlebug Coloring Books as well as their colored image being the poster of Alaska Hope EDS Support Group for 1 full year.
All entries are accepted. There are no fees for entry and no age requirements.
The image attached is the image that MUST be submitted with no doodle changes to the bust itself.
I look forward to your entrees. Please share this post to help spread awareness for Ehlers-Danlos Syndrome.
Thank you and Good Luck

Reported by Cissy Buck – Alaska Hope EDS Support Group

 

_____________________________________________________________________

Here is a flyer I made up for the RI EDS group to help raise awareness this May.

 

EDSGroupflyerColorfinal

Next weekend (May 7-8) the RI EDS group is participating in a 5k benefiting Dysautonomia International. 500 of these flyers will be given out to the participants in the goodie bag, we will also have a table set up with additional information! I’ll keep you updated on any other events we do this month. Thanks for all you do to help the support groups and raising awareness for EDS!

(Click on flyer to make it larger)

Reported by Krista

________________________________________________________________________

Inland Northwest

 

The April meeting of the Inland Northwest Ehlers Danlos Support Group was the biggest yet, and painting the coffee mugs was such a blast!

 

May is EDS Awareness Month, so to raise awareness we are ordering some custom Inland Northwest EDS shirts to tie-dye!

A Spokane-based printing company (IntegriTee) is willing to generously donate the shirts for FREE to our group, that means there is no charge for you!

We are planning a Saturday meeting in Tri Cities, and a meeting on a separate Saturday in Spokane. Two meeting, one activity, one cause, and one goal! Please mark what day and location works best for you.

Reported by Brittany

________________________________________________________________________

NY EDS Marathon

Ehlers-Danlos Hoofbeat Run Walk-N-Roll – August 6, 2016

Ehlers-Danlos Hoofbeat Run Walk-N-Roll will include a 1 mile run/walk/roll, a 5K run/walk and a ½ marathon run happening on August 6, 2016 in King Ferry, NY.

Click here for more about the event

.Reported by Elizabeth

.

.

.

_____________________________________________________________________

Dayton Ohio EDS Zebras Support Group is planning their EDS Awareness month activities

.

 

 

First annual Zebra Picnic.

picnic flyer picture“Dayton Zebra Teen” Caitlin Shipp has created a website and email address for all support groups to ask questions, seek advice and share their picnic experiences. We would love for all of our support groups to do something similar, even if its a small a picnic just for their group members this year. We will begin planning next years picnic sometime in January 2017 so that it is bigger and better than this years.
Caitlin started this picnic to earn her Gold Award for Girl Scouts and therefore we are not allowed to accept any monetary contributions and we are also not allowed to raise money for the Foundation. However, next year, all holds are off and we can do something huge and raise some money 🙂

Click here for more about this new program

Reported by Andrea

_______________________________________________________________________

EDNF

 

EDS Awareness plans to be a sponsor again at the July EDNF conference at the Hilton Baltimore, July 14–16, 2016

Click here for more about the conference

 

.

.

_________________________________________________________________________

EDSIS logoEDS Awareness was invited to attend the International Symposium on Ehlers-Danlos syndrome in New York City, May 3–6, 2016.

The primary goal is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management.

Click here for more information about this event

_______________________________________________________________________

survey-2

 

EDS Awareness published an EDS World-Wide survey with results to be distributed at the 2016 EDS Symposium in New York City, May 3–6, 2016.

Click here for more about the survey

 

 

_______________________________________________________________________

cara EDS Group

 

Cara Burton and her family had an article published in the Southern Indiana Magazine “Explorer”

 

Click here for a link to the article

 

 

 

_______________________________________________________________________

2015 Awareness Support Group Activities

Our EDS Awareness Support Groups reported their 2015 awareness events on this page.  If your group wants to be included in the current year’s report, please send a summary of your activities to us at info@edsawareness.com and we will post them on this page.

 

EDNF Conference in Baltimore on August 13-15, 2015

John & Deanna from EDS Awareness were pleased to be presenters at the EDNF Conference in Baltimore.  We were also a sponsor at the conference. We were able to connect with many new members who now benefit from our free programs and enjoyed seeing current members who stopped by our booth to chat with us.

__________________________________________________________

Here’s what the Asheville NC group has been up to ….

I wanted to give you a few details about our very first EDS Awareness event held in Asheville on June 4 and 5. It was at the Southeast Pain Symposium sponsored by MAHEC (Mountain Area Health Education Center). We were able to set up an exhibit table with awareness and education materials in the main thoroughfare area of the symposium. Myself, Janet Bray, and Dani Gwizdala attended.

asheville_2

(kelly on left, janet on right) – we both had injured our shoulders and were in slings – no kidding!

Asheville_1

 

 

 

 

 

 

 

 

_

_

Our exhibit was called “Ehlers-Danlos Syndrome: An underdiagnosed cause of acute and chronic pain”. We were able to talk with doctors, physical therapists, nurses, and other health professionals as they mingled between sessions. Some had heard of EDS, some had not, all were curious, thoughtful and supportive. One person we spoke with even felt she may have EDS. On our table, we had salt (to talk about POTS), zebra ribbons to pin on people, spoons (to talk about fatigue), EDNF brochures on EDS and pain, our support group flyers to pass out, statistics on the true prevalence of EDS (as prevalent as MS), diagnositc criteria sheets, a picture to show how EDS feels on the inside, a list of common symptoms, misdiagnosis w/ fibromyalgia info (since one of the symposium sessions was on fibro), a listing of common co-morbidities, business cards from our local Genetics office, and some multi-colored candy-coated chocolate covered sunflower seeds to give away – (a demonstration that what you see on the outside of an EDS patient is not what is on the inside – look at the whole patient!).

Here is some background on the symposium:
In 2012 Mountain Area Health Education Center was awarded a Healthcare Innovation Challenge Award to increase knowledge and treatment options for Chronic Pain while addressing the increase in unintentional drug overdose epidemic in Western North Carolina. Funded through the Centers for Medicare and Medicaid Services, this project’s implementation is guided by the Triple Aim. The MAHEC project is testing a new delivery model of chronic pain management at a primary care level. As the grant comes to an end in June 2015, MAHEC is hosting a multiday conference to disseminate, to a regional inter-professional audience, best practices in Chronic Pain care through didactic lectures, panel discussions, audience response, networking events and skills based workshops for providers. The conference will highlight collaborative care that follows the Chronic Pain algorithm, how to link patients with appropriate levels of care, new skills that can treat pain in the primary care visit and complementary practices that are proven to help patients manage pain.

___________________________________________________________

Here’s what the Denver group has been up to ….

For EDS Awareness Month this year we wanted to focus on spreading awareness in the medical community to bring much needed awareness to EDS and make our support group more visible to the medical community.

 

We put together a newsletter for Health Care Professionals about EDS and encouraged our group to share with their doctors and other health care providers.  We also put together a cover letter template to send along with it. It’s been well received!

We put together our first EDS support group newsletter giving a more professional face to our group and activities.

We will be participating in a CSF unite@night walk again this year – June 20.

The University of Colorado Hospital presented to our group on May 13 about a research study on physical therapy for patients with joint hypermobility and how it affects us.  Our local EDS support group was invited to meet with the medical study researcher about all the details involved in the research and how our group could participate.

Children’s Hospital will be presenting to our group on EDS Diagnosis and Management on May 28.

Although not specifically during May, we’ve met with Penelope, a horse with HERDA (Hereditary Equine Regional dermal Asthenia), the horse version of EDS.  Penelope’s owner, Robin Davison, has presented to our group and we were also invited to visit Penelope. A great animal/human connection bringing together EDS & HERDA!

Reported by Nancy & J

_____________________________________________________

Here are some activities in Cincinnati, Ohio

Click here for information about the EDS Awareness walk in Cincinnati on 5/30.

westchester walk 2

 

We had an article published in the local Cincinnati Enquirer about a family struggling with EDS. 

We participated in a number of EDS – CSF unite@night walks this year.

Reported by John

_

 

_____________________________________________________________________________

 

Michiana EDS support group Activities

Just a note from Pam Malenfant to share our day:

Michiana groupThe Michiana EDS group had their awareness booth June 5 in South Bend, IN.  Feel these efforts are very worthwhile when you can give vital information to so many people. We made so very valuable contacts.

 

 

 

 

_

_

_

___________________

Michiana_1

I put up this poster at the YMCA I go to regularly. I am allowed to do this every May. I have answered many questions and keep printed information available to hand out. Others in Michiana EDS support group plan on similar activities.

_
_
_
_

Reported by Pam Malenfant

________________________________________________________________________

Austin EDS support Group Activities & Collage!
_
We had nice group of artistic adults and kids who drew, painted and learned. It was nice to see the creativity of all!
Our next meeting is June 13th and we will have neuro-nutritionist, followed by July speaker on personal training, Dr. Diana Driscol in August and SSA disability in September. Our year is filling up fast.
Reported by Marsha

Austin group colliage

 

____________________________________________________________

North Atlanta EDS awareness activities
We  did our EDS Awareness activity early this year, when one of our members who has been very ill (Amy C.) successfully pushed through legislation to have May recognized as the official EDS Awareness month in Georgia! Now it’s state law.
We have 187 members now, and our community is really becoming a deeply supportive place to share resources and meet in person.
I was delighted to hear of our first official physician referral!
Reported by Melissa

_____________________________________________________________

EDSOK  (EDS Oklahoma) May Awareness activities

EDSOK has a day at the Oklahoma State Capital on Monday May 11th. Group leader Jessica Adelman will be speaking briefly on the House floor following the renewal of the statewide resolution declaring May as EDS awareness month in Oklahoma. The group will also have a table set up in the Capitol rotunda all day to pass out materials and answer questions.

Jessica and Dr. David Chorley, a local primary care physician who sees several EDS patients, might be interviewed on a Tulsa morning show as well. Still waiting to hear back for sure.
Reported by:  Jessica

_____________________________________________________________

Free Physician Conference in Cincinnati, Ohio April 11,2015

We partnered with the Chiari CFS Foundation to host Free Local Educational Conferences with local doctors to discuss EDS and Chiari.  Contact us to find out how you can recruit local doctors in your area and we can help you organize a conference.

Cincinnati EDS-Chiari Conference logo_2

Click here to learn more about the free Conference held in Cincinnati, Ohio

Reported by John

________________________________________________________________________________

This is what the New England EDS Support Group is doing to spread awareness:

1)–Joint Get Together–April 19th-Tomorrow’s get together is a really nice opportunity for our members to talk with one another, share information and provide support to one another.  Also, there will be great food-including gluten free choices.  Last year was our first Joint Get Together and it was one of our group’s favorite events

2)–Team Zebra–May 16th– Come to the walk and join Team Zebra represent all EDSr’s throughout New England.  Wear your zebra colors and join us for this wonderful opportunity to spread awareness and help show the Marfan Foundation we are active in all areas of awareness and would like them to promote and fund future EDS research.

3)–EDS Awareness Month in May–Once again, our Director of Community Outreach-Diana Cleaveland-has come up big and got Governor Baker’s office to sign this year’s proclamation for us to continue May as EDS Awareness Month in Massachusetts.  Thank you Diana!!!!!

During the month of May, we are planning to go to the State House and thank the Governor and his staff as well as provide them with more information on the many key points that we need help with.  We will also visit House Speaker Deleo’s office who has been very supportive of all our work.  We also will stop in on other legislators including Senator Petrucelli who is working on the Co-pay bill to reduce the burden on so many of us.

4)–Conference Calls in May–Our last 3 conference calls that were titled ‘Parent Connection’, ‘Aging With A Connective Tissue Disorder’ and “Spouses and Significant Others’, were well received by our members/attendees.  I want to thank all the moderators for the help and support on all 3 calls. As promised, I will be setting up the same topic of calls at earlier times during the day for everyone who said they would be available.  I will also set up a few new topic calls in the coming months which will include ‘Dealing With A Chronic Illness’ that will be moderated by Dr. Greg Golden

5)–Joint Meeting-June 7th–At June 7th’s Joint Meeting of the EDS NE/MA Support Group and the MA Chapter of the Marfan Foundation, we will have 2 presenters-Dr. Pradeep Chopra (one of the top pain specialists in the U.S.) and Ellen Smith (Co-head of the EDS RI Support Group and also works with the RI Arthritis Foundation and is a U.S Pain Foundation Ambassador

6)–Awareness Table Initiatives – June–I am still working on arranging an awareness table at MGH and/or CHB and more than likely it will be in the month of June

Reported by Jon Rodis

____________________________________________

This is what the RI EDS Awareness and Support Group is doing to spread awareness:

Miriam May Awareness Event – May 4th-May 8th

Take part in our 2nd annual EDS Awareness Event at Miriam! May 4th-May 8th Miriam Hospital is allowing us to set up a table in the hallway for five days in May. The dates are May 4th– May 8th from 8am to 5pm. We will have a table with our Proclamation displayed as well as a couple of small posters with EDS information, information to hand out like the EDNF brochures and others that I bring to the meetings. You don’t need to be overly knowledgeable about EDS, we just need people who want to help that have been affected by EDS (yourself, friend or family member) We will have all the information to provide. It will be fun to get out and raise awareness for EDS and related conditions, and maybe make a new friend while you are at it.

Reported by Krista Brack

__________________________________________________________________________

 

 

___________________________________________________________________________

OSU Team_3Our Columbus EDS Support Group participated in this event on February 13,2015:

Ohio State provided free “Buckeyes Care” T-shirts, Foam Hockey Sticks, and autographed posters for fans.  Answers for Erin provided free awareness bracelets and Ehlers Danlos Syndrome literature.  The Columbus EDS support group provided an awareness display and banners.  The event was advertised on Facebook groups, Twitter and Instagram and drew a large crowd including several EDS families from across the state of Ohio.  It is estimated there were at least 200 fans of all ages in attendance.

Reported by Andrea Jolley

Click here to read more

_________________________________________________________________________________________


2014 Awareness Events

Several of our EDS Awareness Support Groups reported on their 2014 awareness events:

_________________________________________________________________________________________

Here is what the Charlotte, NC EDS Support Group is doing to spread awareness:

2nd Annual Chiari Syringomyelia Foundation Unite@Night Walk

chiari walk

Friday, June 27, 2014 from 6:00 PM to 8:30 PM (EDT) Charlotte, NC

Most people who suffer from Chiari or syringomyelia will tell you: their conditions are not simple. Often, there exists a wide array of related disorders, including idiopathic intracranial hypertension (IIH), hydrocephalus, Ehlers-Danlos Syndrome (EDS), and dysautonomia, just to name a few.

The 2nd Annual Charlotte Unite@Night will support CSF to provide education and increase awareness while funding research projects that can potentially find answers to help those who are fighting these disorders.

Unite@night will be a one mile casual evening walk, in various locations around the country, during the month of June in 2014. These walks will bring together people who are suffering with the devastating effects of Chiari malformation, syringomyelia, Ehlers Danlos, hydrocephalus and related disorders.

Click here to read more

_________________________________________________________________________________________

Here is what the Arizona EDS Support Group did in May:

The Arizona EDS Support Group had our annual picnic on May 10th. We had about 30 people who attended. The weather was sunny and thankfully only a high of 97 that day.

_______________________________________________________________________

Here is what the Rhode Island EDS Awareness and Support group did in May:

The Rhode Island EDS Awareness and Support group held a week long awareness event at a local hospital. We were able to set up a table with lots of EDS information at the Miriam Hospital here in Pawtucket Rhode Island, they also allowed us to have people manning the table handing out information and talking to people who passed by. We had an excellent spot right outside the cafeteria and anyone who ate that week had to see us! Even those who didn’t stop could not avoid becoming more aware of EDS, we had posters and flyers of information.  They also let us keep the table set up throughout the week so that even the night shift had a chance to read up on EDS. We had an overwhelmingly positive event, it went very well and we were able to connect other people affected by EDS in our community and raise awareness for EDS and invisible pain of all kinds

  ________________________________________________________________________________

Here is what the Columbus EDS Support Group did in May:

Columbus hosted an awareness tent at the Westerville 4th Friday event. The entire community comes out for the evening. Last year we were able to actually speak to over 200 people about EDS!
In August, Columbus, Ohio is hosting an awareness showcase at our local library. We’ve been given permission to decorate the display cases with info, art, pottery, poetry, stories, printed postŷers, quilts, photographs (viewer friendly, please) zebra figurines, etc… about life with EDS.
This event is open to contributions by anyone affected by EDS, including family members. We are looking for any of the above items to display.
These items will be displayed the entire month of August at the Westerville Public Library.
Items submitted must be received by July 1, 2014 and will become a permanent part of a growing collection to be used at future awareness events. My dream is that the collection grows large enough to justify an event on the Statehouse lawn one day! Maybe even the White House

________________________________________________________________________________

Here is what the Michiana EDS Support Group did in May:

1)The YMCA is giving bulletin board space to post information and about EDS.
2)We will have a booth the day before the Sunburst Races in South Bend, IN on May 30. We will put up posters and hand out information, and answer questions about EDS to many of the hundreds of people who come past. Previous years we have made contact with teachers, dentists, PTs, and even EDSers.

_______________________________________________________________________________________

Here is what the Dayton Ohio EDS Support group did in May:

The Dayton EDS Support Group will be featured on Radio promoting May EDS Awareness Month!

Click here for a link to radio broadcast

___________________________________________________________________

Here is what the Cleveland, Ohio EDS support group did in May:

On May 30, we had an awareness table at The Cleveland Clinic main downtown campus. campus. This was set up near the cafeteria area during hours when the doctors and medical staff are taking lunch breaks. We handed out awareness materials oriented towards medical staff. We provided our support group information card to give doctors who might see EDS patients. It was a great success!  We talked to more than 30 doctors and many staff and patients!

_____________________________________________________________________________________

Here is what the St Louis EDS Support Group is did:

The St. Louis EDS Support Group will be featured on TV! Tune in to ABC30 on channel 12 on Saturday, May 10 at 12pm to watch!

______________________________________________________________________________________

Here is what the New England EDS Support Group did in May:

  • May—The entire month of May is EDS Awareness Month and thanks to our Director of Community Outreach-Diana Cleaveland-we have this year’s Proclamation (signed by the Governor) making May our EDS Awareness Month for Massachusetts.   I would like to ask everyone to reach out to their local town or city officials, local cable channels, local newspapers, etc and show them a copy of the proclamation and tell your story to them.  (Last year Diana and one of our other members, Kyleigh Dachos told their stories to a local newspaper.  We also brought copies of the Proclamation to the State House and talked to the Governors staff and many of the legislators and representatives )

This will be a wonderful way to raise awareness during May’s EDS Awareness Month. For more information contact Diana at oriablue@gmail.com or myself, at wsalmgcdjm@aol.com .

  • June 20th Marfan and EDS Awareness Tables at Brigham and Women’s Hospital-7 a.m to 5 p.m-(more details to come)
  • September 13th  –New England Symposium-Manchester, NH-For more info.-contact Kaddy Ackroyd at kaddy1953@gmail.com.

~Dr’s Hal Dietz, Brad Tinkle and Pradeep Chopra will be presenting.~

_____________________________________________

Here is what the Alabama EDS Support Group did in May:

We had an event night at Jason’s Deli in Homewood, AL from 5 PM TO 10 PM where we will be raising awareness and raising funds for our nonprofit which supports individuals with EDS in AL and chooses to support EDNF’s research.
June 7th we had a Summer Watermelon Festival at Homewood Central Park in Homewood, AL to raise awareness. Proceeds will be donated directly to research through EDNF. Attached is our event flyer.
Slide1
____________________________

2013 Awareness Events:

EDS Massachusetts/New England Support Group

In preparation for our May 17-24 EDS Awareness week, we are going to have videos made of our members holding the Massachusetts Proclamation and each of us will say thank you to our Governor (Governor Patrick) for supporting us in our efforts.

For the actual week, we are going to go to the Governor’s office in the State House and thank him and his staff personally. We are also going to take the opportunity to go around the state house and stop by all the state representatives that are in that specific day and tell them about EDS, our stories, etc.

We also are going to send the media information on May being EDS Awareness Month and we hope to get interviewed or have an article printed on EDS.

_________________________________________________________________________________________

Columbus, Ohio EDS support group is participating in a May event located in Westerville, Ohio. The event will be held on May 24th during the Fourth Friday Celebration. This event brings the entire community out to the ” uptown” area for fun, food, fellowship and festivities. Our group will provide seating and tables for 16 people in exchange for a spot at the event to create community awareness.

_________________________________________________________________________________________

Oregon EDS support group

The Oregon group will be celebrating EDS awareness month with two events. Our first event will be a walk/rally at the Waterfront park in Portland, OR on May 18th, where we will be wearing our zebra shirts with pride and passing out flyers and business cards after we take a small jaunt through the park. Our second (but not least) event will be held on May 25th, where we will be hosting a mini-conference complete with speakers and with many doctors and members of the medical community in the audience. We expect to see greater than two hundred people, likely even three hundred as our RSVP’s continue to build!

We were fortunate enough to receive a Proclamation from our Governor last month declaring May to be Oregon’s awareness month so we’re sitting pretty in that department.

_________________________________________________________________________________________

The Cleveland, Ohio EDS support group held several activities for May

On May 22, the Cleveland group had an awareness table at The Cleveland Clinic main downtown campus. This was set up near the cafeteria area during hours when the doctors and medical staff are taking lunch breaks. We handed out awareness materials oriented towards medical staff. We brought our support group information card to give doctors who might see EDS patients.

– On May 24, we had an awareness table at University Hospitals (affiliated with Case Western Reserve University) downtown campus. 

– On May 9, we had an awareness table and display at the Gilmour Academy’s 13th Annual Service Fair. This is a local private, parochial high school. Students are required to complete a minimum of 60 service hours prior to graduation. Approximately 300 students will be in attendance, which will provide us with a good opportunity to share information regarding volunteering opportunities with our group, and also talk to the students about EDS.

– We have an awareness table at a large suburban church for “Disabilities Sunday”.  The church is having this activity to bring awareness to all types of disabilities and encourage compassion & service to the community. There will be 4000 people in attendance at 4 church services that day. We will be handing out EDS awareness materials written for the public audience.

– In January 2014, we will host an EDS presentation to the Greater Cleveland Nurses Association.  The presentation will earn CE credits for the nurses. Typically, their quarterly meetings are attended by 40 to 60 nurses. Dr. Anna Mitchell, Geneticist, will present the clinical aspects of EDS. A panel of  EDSers will participate in presenting topics such as: living with EDS, experiences with diagnosis, symptoms, etc. Nurses will be given talking points to discuss EDS with their doctors, and questions to ask patients when taking histories and discussing symptoms.

_________________________________________________________________________________________

The Carolians EDS Group is just starting and may not have an event this year, but we will wear our EDS awareness shirts proudly along with our friends and families on Saturday, May 25th. Adriana has been working on something for other groups if they want to….

After her surgery she developed an interest in making cookies as a hobby and just finished making some for her neurosurgeon last week and  thought she can share it with the group if you think they might like it. Attached is a picture of the cookies she made. The only thing is that they are not cheap because the edible inks are expensive but she could make them without the chiari and with the zebra like in our group’s picture.  –

Adriana Cookies_1

_________________________________________________________________________________________

Here are our Dallas EDS Support Group activities and their status to date:
ACTIVITY # 1: A WALK IN THE MALL: We have chosen Valley View Mall for
this activity. I sent an Email to the Vice-President of Property and
Management in the Mall Management office. I received a reply and have
an appointment to see whether or not the Company that owns the mall is
interested in “Sponsoring” our activity. The appt is this Wed, 4/10 at
10 AM. We have 9 people signed up for this activity. We will have one
table manned by one of our members at the end of the path with cookies
and water for the walkers. This will be a week-end event for about 2
hours. See ahead for the fliers.
ACTIVITY # 2: A apresentation Table at the U of Texas SW Medical
Center at Dallas ( I am a PhD alum from this school- hoping that
helps) I have sent an email to the Director of Property management and
Public Affairs requesting space for one table near their South Food
Court, etc. Waiting to hear back from him. We also have 9 members
signed to cover this location. This will be a week-day event for about
2 hours, preferably around the lunch hour.

FLIERS: We have 2 fliers in final draft form.
Flier #1; Design for the public- Speaks in more lay terms about the
symptoms of EDS, disorders that it is confused with, other conditions
that often present with EDS. How to contact sources of information and
support for EDS.
Flier # 2: Designed for the medical profession- Bridges with the
reference and meaning of the Zebra. Talks about the under-diagnosis of
EDS and signs to look for that may indicate EDS. Also includes
co-morbid conditions with EDS and also links to EDNF for additional
clinical information.

BUSINESS CARDS: 2 cards
1 of the business cards is very simple with name of the disorder and
reference to the local support group and how to reach us. The other
one has more information about EDS along with how to access the local
support group.

We also have a number of DRG fliers from earlier which we will have
available at the table at the medical school.

_________________________________________________________________________________________

On the 24th of May we are hosting a “zebra takeover” in Winchester, Hampshire, UK. People will be dressed up in zebra onesies offering leaflets and cards to the general public. Also collection buckets will be there to raise money for ehlers-Danlos uk.. We will also be having a magician there to drum up some crowds. Using the event to boost awareness of the condition and attract more people to my new website http://www.edstogether.com which offers a positive approach to living with EDS. IF YOU HAVEN’T CHECKED IT OUT YET PLEASE DO

Email us at info@edsawareness.com if you have questions about the programs.

We welcome your Comments and Likes

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Upcoming and Previous Webinar Speakers

  • webinar-image

    September 19, 2017
    Anne Maitland, MD, PhD
    “Mast Cell Activation Update “

    Learn More

  • webinar-image

    Joshua Milner, M.D.
    “Update on Tryptase Research”

    Learn More

  • webinar-image

    Delia Chiaramonte, MD
    “Practical Stress Management: A Mind-Body Approach”

    Learn More

  • webinar-image

    Manu Sood, MD
    Katja Kovacic, MD
    “Gastrointestinal Motility Disorders and Cyclic Vomiting”

    Learn More

  • webinar-image

    Gisela Chelimsky, MD
    “Hypermobile EDS and Gastrointestinal Issues”

    Learn More

  • webinar-image

    Pradeep Chopra, MD
    “Management of complex pain in children and adults with EDS”

    Learn More

  • webinar-image

    Pradeep Chopra, MD
    “EDS Pain Management – Connecting the DOTS… part 3”

    Learn More

  • webinar-image

    Dr. Ajoy Sarkar
    “Ehlers-Danlos Syndrome Hypermobility Type in the UK: Missed or Just Misunderstood?”

    Learn More

  • webinar-image

    Sara Williams, PhD
    “Biofeedback: Training your Body to Relax”

    Learn More

  • webinar-image

    Jan Dommerholt, DPT
    “Physical Therapy for EDS – Part 2”
    Why does it hurt all of the time?

    Learn More

  • webinar-image

    Markus-Frederik Bohn, PHD
    “Tenascin X and Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Marco Castori

    “Multidisciplinary Diagnostic and Management Approach to the EDS Patient”

    Learn More

  • webinar-image

    Professor Claude Hamonet and Dr. Isabelle Brock

    “A French Perspective on Ehlers Danlos”

    Learn More

  • webinar-image

    Dr. Delia Chiaramonte

    “An Integrative Approach to Pain Management”

    Learn More

  • webinar-image

    Dan Doherty — YouScript / Genelex Corp.

    “Pharmacogenetic Testing to Assess Altered Drug Metabolism”

    Learn More

  • webinar-image

    Dr. Alan Pocinki

    “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?”

    Learn More

  • webinar-image

    Dr. William Ericson

    “Orthopedic Issues in the EDS Hand, Wrist and Arm”

    Learn More

  • webinar-image

    Dr. Norman Marcus

    “EDS & Pain”

    Learn More

  • webinar-image

    Dr. Lawrence Afrin

    “Mast Cell Activation Syndrome”

    Learn More

  • webinar-image

    Diane O’Leary, PhD

    “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients

    Learn More

  • webinar-image

    John Ferman and Deanna Hamm

    “World-Wide EDS Survey Results” by EDS Awareness
    (2544 respondents from 26 countries)

    Learn More

  • webinar-image

    Sara Williams, PhD

    “Cognitive Behavioral Therapy as a Coping Skill for EDS”

    Learn More

  • webinar-image

    Dr. Anne Maitland

    “Mast Cell Activation Syndrome in EDS Patients (Part 2)”

    Learn More

  • webinar-image

    Dr. Neil Schechter

    “Chronic Pain Hypermobile Children”

    Learn More

  • webinar-image

    Karen Foulks, OTR/CHT
    Jesse Garris, Silver Ring Splint Co.

    “Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”

    Learn More

  • webinar-image

    Dr. Holly Gilmer

    “Chiari Malformation in EDS”

    Learn More

  • webinar-image

    Dr. Blair Grubb

    “Postural Orthostatic Tachycardia Syndrome (POTs)”

    Learn More

  • webinar-image

    Trish Meegan, DPT, L, ATC

    “Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)”

    Learn More

  • webinar-image

    Dr. Petra Klinge

    “Tethered Cord Syndrome in Ehlers-Danlos”

    Learn More

  • webinar-image

    Kelly Clancy, OT

    “New and Emerging Manual Therapy Approaches for EDS”

    Learn More

  • webinar-image

    Dr. Clive Bridgham

    “Chronic Pain Alternatives – with focus on inflammation and nutrition”

    Learn More

  • webinar-image

    Kevin Muldowney, MSPT

    “Physical Therapy Protocol for Ehlers-Danlos Syndrome” (using the new EDS Physical Therapy Book)

    Learn More

  • webinar-image

    Dr. Mitzi Murray

    “How, Why and When: Genetic Testing in EDS for the Non-Geneticist”

    Learn More

  • webinar-image

    Ellen Lenox Smith

    “Living Life Again with Dignity Using Medical Marijuana”

    Learn More

  • webinar-image

    Dr. Joan Stoler

    “Update on Complications and Rare Forms of EDS”

    Learn More

  • webinar-image

    Jennifer Ortiz, MPT, WSC

    “Physical Therapy for Sexual Dysfunction in EDS”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. John Mitakides

    “Musculoskeletal Headaches in EDS”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Foot & Ankle Issues with EDS”

    Learn More

  • webinar-image

    Dr. Hal Dietz

    “Connective Tissue Disorder Research”

    Learn More

  • webinar-image

    Dr. Theoharis Theoharides

    “Mast Cell Disorders”

    Learn More

  • webinar-image

    Dr. Brad Tinkle

    “Introduction to Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Ronald Jaekle

    “Ehlers-Danlos and Pregnancy”

    Learn More

  • webinar-image

    Dr. Manu Sood

    “Gastrointestinal Disorders in EDS”

    Learn More

  • webinar-image

    Dr. Forest Tennant

    “Managing Centralized Intractable Pain in Ehlers-Danlos”

    Learn More

  • webinar-image

    Cynthia Allen, GCFP, STMI

    “The Feldenkrais Method”

    Learn More

  • webinar-image

    Dr. Mark E. Lavallee

    “Exercise is Medicine”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Howard R. Epps

    “Orthopaedic Considerations in EDS”

    Learn More

  • webinar-image

    Jan Dommerholt, DPT

    “Physical Therapy for Ehlers-Danlos, Part 1”

    Learn More

  • webinar-image

    Dr. Henry Burkholder

    “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

    Learn More

  • webinar-image

    Dr. Peter Byers

    “Vascular Ehlers-Danlos Syndrome / EDS type IV”

    Learn More

  • webinar-image

    Subinoy Das, MD, FACS, FARS

    “Sinus Care for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT

    “Dry Needling for EDS Pain Management: Can muscle performance be improved?”

    Learn More

  • webinar-image

    Diana Lebron, MD

    “Headaches and Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Shweta Dhar, MD, MS, FACMG

    “Coordination of Care in Adults with EDS”

    Learn More

  • webinar-image

    Kathleen Kane, ESQ

    “Applying for Disability”

    Learn More

  • webinar-image

    Dr. Richard Barnum
    “EDS and Psychiatric Illness Misdiagnoses”

    Learn More

  • webinar-image

    Dr. Anne Maitland
    “Mast Cell Activation Syndrome” Part 1

    Learn More

  • webinar-image

    Dr. Alan Pocinki
    “Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS”

    Learn More

  • webinar-image

    Dr. Derek Neilson
    “Proving the obvious: Next Steps for the Demystification
    of the Ehlers-Danlos Hypermobility Type”

    Learn More

  • webinar-image

    Dr. Peter Rowe
    “Managing Orthostatic Intolerance in EDS”

    Learn More

  • webinar-image

    Prof Joel Lamoure, RPh., DD., FASCP
    “Medical Psychiatry in Pain Management”

    Learn More

  • webinar-image

    Eric Palmer, Orthotist
    “Bracing for EDS”

    Learn More

  • webinar-image

    Dr. John Mitakides
    “TMJ, Cervical Instability and EDS”

    Learn More

  • webinar-image

    Dr. Staci Kallish
    “Cardiac Manifestations in EDS”

    Learn More

  • webinar-image

    “EDS and Pain… Connecting the Dots” Part 2

    Pradeep Chopra, MD

    Learn More

  • webinar-image

    Presenter: Kevin Muldowney, PT Click here for a link to the announcement page Video link is on this page

    Learn More

  • webinar-image

    EDS Pain Management. (Part 1)
    Dr. Pradeep Chopra

    Learn More

  • webinar-image

    Presenter: Michael, Healy, DPT Click here for a link to the announcement page  Video link is on this page

    Learn More

  • webinar-image

    Presenter: Ellen Lenox Smith Click here for a link to the announcement page.  Video link is on this page

    Learn More

  • webinar-image

        Presenter:  Carl Mentesana, DDS Click here for a link to the announcement page  Video link is on this page

    Learn More

  • webinar-image

    Presenter: Stephanie Gandomi, MS Click here for a link to the announcement page. Video link is on this page

    Learn More

  • webinar-image

    Dr. Kenneth Goldschneider
    Pain Management for EDS

    Learn More

Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,311

Loading ... Loading ...