2018 EDS Awareness Month Events

EDS Means We’re Fragile but Unbreakable

This year, we seek to strengthen our connections, medically, physically, emotionally, socially, and politically.

ACT NOW! COMMUNICATE the physical, emotional, social,  financial, and accessibility challenges people living with EDS/HSD face through the suggestions you can find on https://www.ehlers-danlos.com/awareness-2018/.

May 2

EDS Awareness Day

Event address:
Magnet Farm, Dover Road, Ringwould, Deal, Kent CT14 8HF United Kingdom
https://goo.gl/maps/RpXN9eABhrv

Bake sale and coffee morning fundraiser.

Contact:
Michelle Bowen – Palmerbowen.michelle@gmail.com

May 4

Lynn’s Lularoe For Zebras

We have a huge group of Zebras here in the Puget Sound. I’m hosting a Lularoe party on May 4th at 6:30 which will not only be done in person but will be online as well. We have a group of 6 Zebras putting this on and we will be raising funds for the Ehlers-Danlos Syndrome Society.

Location:
12101 Daphne Ln NW,  Apt B 210, Silverdale WA 98383 United State
https://goo.gl/maps/fubU2vJkesG2

Contact:
Lynn Davis – lynndavis384@gmail.com

Flyer for Meagan's H.O.P.E Memorial Walk for EDS Awareness and Suicide Prevention

May 5

Meagan’s H.O.P.E Memorial Walk for EDS Awareness and Suicide Prevention

Event address:
Oak Island Park, 500 River Drive, Wausau, Wisconsin 54403 United States
https://goo.gl/maps/881JG2iNjf92

Meagan Rae Braun was a kind, caring, loving person with the most beautiful, gentle soul. She grew up in Medford, WI and most recently resided in Weston. Meagan was an incredible mother of two adorable children she loved more than anything. They made her world complete. Meagan was an extremely intelligent young woman who helped anyone and everyone she could on this earth. She was a “giver” who sought knowledge, truth, peace and harmony. Behind her gorgeous smile, Meagan suffered. She had multisystemic illnesses including Ehlers-Danlos Syndrome, hyperadrenergic POTS, and many allergies and sensitivities. She battled with depression, especially postpartum, and she lost hope. Meagan’s body and mind failed her, resulting in her death from suicide on April 24th, 2017. In honor of her gracious spirit we are bringing you the first annual Meagan’s H.O.P.E. (Helping Other People Everywhere) Memorial Walk for EDS Awareness and Suicide Prevention.

This walk is being held to raise money and bring awareness surrounding EDS and related disorders to develop support and resources for patients and medical professionals.

Registration to start at 11:30am; speakers, special guests, and announcements to start at 1 pm with one mile walk to follow.

http://www.edswi.org/

Hosted by EDS Wisconsin, Inc, EDS Wellness, and the Braun Family of Meagan. Sponsors include: WIPS, Prevention Genetics, The Caring Tree Childrens Counseling Center, AT/GC (Advanced Tele Genetic Counseling), EDS Awareness, Mariah Liisa Design, TOM (Tools of Marketing), Concrete Creations of Wi, Inc

Contact:
Angela Braun – brauna98@hotmail.com

May 10

EDS Awareness Day

Event address:
6 Spinney Close, Liddington, Swindon SN4 0HQ United Kingdom
https://goo.gl/maps/SREAf43bYyN2

Raising awareness of Ehlers-Danlos and its effects on both mental and physical health in children and adults.

Contact:
Kirsty Allcock – Sunset-Dreams@hotnail.co.uk

May 12

The Netherlands Hospital EDS Awareness

Event address:
Recht Boomssloot, 77-1, Amsterdam, AMSTERDAM 1011CW Netherlands
https://goo.gl/maps/zxxMCTgjp2s

Contact:
Willem Mesman – willemmesman@gmail.com


Physical Therapy Talk by Tiffany Hodges, (PT) DPT

Event address:
Martha Cooper Library (Large Meeting Room)
1377 N Catalina Ave, Tucson, AZ 85712, United States
https://goo.gl/maps/THP78ncfRC12

Tiffany Hodges (PT), DPT, OMPT will be giving a talk on Physical Therapy and EDS/connective tissue disorders.

https://www.facebook.com/groups/tucsonseds/

Contact:
Hannah Soreng – Hsoreng@gmail.com


Rhode Island EDS Five-Year Anniversary Party

Event address:
Warwick Public Library
600 Sandy Ln, Warwick, RI 02889, USA
https://goo.gl/maps/kdFVw6Gv3Sm

Happy Awareness Month from the Rhode Island Ehlers-Danlos Syndrome Awareness and Support Group! We are celebrating five years together as a group. We will be having two contests:
1. Dress like a zebra – come show off your stripes in your best zebra inspired outfit!
2. Zebra inspired Artwork. Submit your art/craft work with a post card describing your piece with your name and contact information.

We have some great raffle prizes to give away and will be decorating zebra masks for a group photo.

We will have snacks, drinks and lots of free awareness information! No RSVP required! Event is at the Warwick Public Library, but if you’d like to help set up on the day of the event (arrive 20 minutes early) or want to help with food/drinks contact krista@rieds.org

Contact:
Krista Brack – krista@rieds.org

May 14

Legacy Trust Foundation at the Grand Rapids Art Museum

Event address:
101 Monroe Center St NW, Grand Rapids, Michigan 49503 United States
https://goo.gl/maps/4JyLJw5C9R42

Sarah Schlomer will be in the Grand Rapids Art Museum from 10 am to 5 pm with a 10-foot tree explaining connective tissue and Ehlers-Danlos. She is trying to get into ArtPrize through Legacy Trust. On the 15th it will be free for the public to see. It is a competition for only disabled people. If anybody is in the Grand Rapids Michigan area please come vote on the 15th. It is her largest opportunity to make people aware of Ehlers-Danlos; the ArtPrize would bring awareness to thousands of people.

Legacy Trust (an organization that regularly helps the disabled) has put on a competition for disabled artist for the past 9 years. The top four that are chosen go up in ArtPrize, the world’s largest art competition, at the DeVos Place.

“If I win Legacy Trust will help me with all fees and insurance along with marketing my piece. If I place in the top four, Legacy Trust will have me do personal interviews and I will be used for marketing. I will have a lot of chances on TV to explain connective tissue and EDS. Legacy trust wants a good representative of someone who’s sick but still lives instead of just surviving. I’ve been diagnosed with over 43 problems. Diagnosed with well over 20 comorbid syndromes. Legacy Trust wants me as much as I want them because both of us are about spreading awareness about disabilities. If I win money half of it will go to Legacy Trust to further help them with disabled people. Money will be donated to the Society as well.”

Contact:
Sarah Schlomer – sarah.schlomer@yahoo.com

May 15

Health Advocates — Invisible Illness Awareness — What is EDS?

Event address:
Quorum Business Park (Q6), Benton Lane, Newcastle upon Tyne NE12 8BW, United Kingdom
https://goo.gl/maps/kRifRXCQdxu

Line managers and support staff at work will receive training on invisible illlness and how it might affect their staff, using my EDS as an example during EDS awareness month. Sponsored by NCFE.

Contact:
Dawn Mulvaney – dawnmulvaney@ncfe.org.uk

May 16

EDS Awareness Coffee

Event address:
24 Fairways, Waltham Abbey, Essex EN9 1SY United Kingdom
https://goo.gl/maps/8ezUVSwqNzB2

A coffee morning to speak about Ehlers-Danlos syndromes.

Contact:
Kerry Borrill – Kerry.bc5@gmail.com

May 17

EDS Awareness Day at the Rhode Island State House

Event address:
82 Smith St, , Providence, RI 02903 United States
https://goo.gl/maps/L8t4zssDGhy

Ehlers-Danlos Syndromes Awareness Day at the RI State House. RI EDS will be at the RI state house on May 17th in the afternoon with two awareness tables and multiple volunteers/advocates raising awareness about EDS and other connective tissue issues, including chronic pain. We will have up-to-date society information at the tables as well as people living with connective tissue disorders on hand to talk about what their lives are like and to answer questions.

Sponsored by Rhode Island Ehlers-Danlos Syndrome Awareness and Support Group.

Contact:
Krista Brack – krista@rieds.org

May 18

EDS Awareness Charity Livestream

Kayleigh Maijala is hosting a livestream on her Twitch channel (http://twitch.tv/trufflette) to raise awareness and donations for the EDS Society. “I have EDS and have started to notice others around me who do, but had no idea what it was. Seeing them get diagnosed and the questions they had but didn’t realize was incredible. I want to provide a safe and compassionate space to share that information to more people. I aim to go over the Beighton scale, read a few stories, share my own story, and have a call with my Mom who also has EDS. She found out because of my journey.”

Contact:
Kayleigh Maijala – KAYLEIGHMAIJALA@GMAIL.COM


Dysautonomia Support Network logo

EDS, Genetics & You

Event address:
18 Whittier Dr, Johnston, RI 02919, USA
https://goo.gl/maps/VnhcysEAqbJ2

May is EDS and HSD awareness month, a month to celebrate the zebras among us. We are each unique and with that it brings even more meaning that we have a guest joining us for our LIVE Facebook Event.

Dr. Atwal, a geneticist who specializes in EDS and mitochondrial disorders will be answering questions that were developed based on a polling of our Dysautonomia Support Network community. While we may all be at different stages of our diagnostic journey, we all started somewhere. Let’s start at the beginning.

To register, please visit https://www.facebook.com/events/296926317510730/

Contact:
Erin Sterling – erinsterling@dysautonomiasupport.org
https://www.dysautonomiasupport.org/

This event includes a Twitter chat; please follow http://twitter.com/DysSupport.

May 19

EDS Awareness Float in Council Bluffs Parade

Free to the public! Downtown council bluffs by the carnival! May 19th at 10am!
https://goo.gl/maps/MFv69mBsMSF2

We are creating a float, sponsored by several companies, in our city parade for EDS awareness! We have made mini coloring books to hand out about EDS. I worked with local companies to sponsor us in the fight to spread awareness! I have pro wrestlers, Calista the EDS fairy, zombie squirts creator, and lots of family and friends!

Contact:
Becky Saunders, Beckumrae@gmail.com

Graphic for NYC May 20 Event

May 20

Connect Our Tissues! NYC EDS Awareness Photo Shoot & Social Event

Celebrate EDS Awareness Month 2018 at our EDS community social event
2:00–4:00 pm

Event address:
Washington Square Park, New York, NY 10012, USA
https://goo.gl/maps/LuUSBir5tbT2

Stand up and be counted! Connect Our Tissues in group photo session to raise awareness—globally.

We will have:

  • Free EDS Awareness T-Shirts, streamers, and signs
  • Light refreshments
  • Group and individual photos
  • Medical students and doctors are invited

Representatives from:

  • EDS-NYC
  • Long Island EDS Support Group
  • The Ehlers-Danlos Society

Meet at:
Washington Square Park at the Fountain
(no swimming)

RSVP for T-shirt size:
Please RSVP and select your free T-shirt size and grant a photo release.
T-shirts will be provided to the first 100 registrants who arrive at the event before 3 PM.
If you RSVP, we will have one waiting for you. However, no show, no tee.

Driving directions:
Washington Square Park is in the heart of Greenwich Village in New York where 5th Ave ends at Waverly Place. Street parking is limited but there are underground garages in the area. (In the age of Waze do we need anything more for driving?)

Subway:
A, C, E and B, D, F, M to West 4th St
R, W to 8th St.-NYU
6 to Astor Place
1 to Christopher St.

Rain plans:
In the event of rain we will hold the event at the American Museum of Natural History at Central Park West & 79th St. We will announce via email and web page EDS-NYC.com by 10 AM should plans change.

Flyer for Southern California 2nd Annual EDS Awareness Party

May 20

2nd Annual EDS Awareness Party

Event address:
112 N San Fernando Blvd, Burbank, CA 91502, United States
https://goo.gl/maps/AzHjqai9Tt62

Get together with other EDS Zebras from across Southern California to party, learn about EDS, raise awareness, and fundraise for The Ehlers-Danlos Society!

Co-hosted by SFV Zebras (Ehlers Danlos Syndrome Patients in the San Fernando Valley), SoCal Zebras (ehlers-danlos)
SoCal EDS Etc., 805 Ehlers-Danlos & Related Conditions support

https://www.facebook.com/events/403331363467484/

Ticket information:
https://www.eventbrite.com/e/2nd-annual-eds-awareness-party-tickets-44518916277

Contact:
Elana Simon – elanalsimon@gmail.com

N-JOY 5K

May 20

May’s 5k

Event address:
5428 Fenwick Ave, Norwood, Ohio 45212 United States
https://goo.gl/maps/TKuECfTj23t

This month’s 5k will include talking to the people in our group about this condition, talk about resources we can reach out to, different doctors and medicines we’ve tried, therapies, what we’ve done that helps and what doesn’t. I have found a couple others in my town that have EDS. I want to talk to them to meet even more people, I’m hoping maybe they’ll bring people, and slowly my circle will grow.

Contact:
Joyce Jarboe – joyceabrowning@yahoo.com

May 22

EDS Awareness at Loma Linda University

25040 Stewart St., Loma Linda, CA 92354 United States
https://goo.gl/maps/rzHEvEPWWSK2

I will be handing out flyers and discussing EDS with the students of Loma Linda University, a medical and dental school.

Contact:
Dulce Haviland – tlsouth32@gmail.com

May 24

What is Ehlers-Danlos Syndrome/

13 Thistleton Rd, Preston PR2 1PS, UK

Giving a talk to school children about how Ehlers-Danlos syndrome affects people and how kindness and thoughtfulness can make a big difference in someone’s day.

Contact:
Deborah Lyon – debbielektra@gmail.com

Nebraska EDS Awareness and Support Group logo

May 26

March to the Zebras

Event address:
Omaha’s Henry Doorly Zoo and Aquarium, 3701 S 10th St, Omaha, NE 68107, USA
https://goo.gl/maps/ZsprqPCq25F2

Nebraska EDS Awareness and Support Group members, family, friends and anyone wanting to attend will meet in the common area just inside the desert dome of the Omaha Henry Doorly Zoo at 11:00am and collectively walk toward the zebra exhibit for a group photo. Electric scooters and manual wheelchairs are available to rent from the zoo on a first come, first serve basis.

Each participant will be required to pay for their zoo entry or provide current membership card for entry.

Contact:
Brenda Spencer – brenda.spencer@edwardjones.com

Pace University Physician Assistant Program

May 30

Pace University Physician Assistant Program Ehlers-Danlos Syndrome Awareness

Event address:
861 Bedford Road, Lienhard Hall, Pleasantville, Pennsylvania 10570 United States
https://goo.gl/maps/6KED83W7huv

A current physician assistant student at Pace University with Ehlers-Danlos Syndrome will raise awareness. Sponsored by Pace University-Pleasantville PA Program Student Society.

Contact:
Amy Liang – liangamy298@gmail.com

2nd Annual Hoofbeats

June 2

2nd Annual Hoofbeats Ehlers-Danlos Syndromes and Rare Diseases 5K
9 AM-11 AM

Event address:
NHTI – Concord’s Community College, 31 College Dr., Concord, NH 03301 United States https://goo.gl/maps/1vQDEcRYmY42

Schedule:
Day of Race Registration: 7:30AM
Race/Walk: 9:00AM
Free Kids Fun Run: 9:45AM
Awards: 10:00AM
Wicked Awesome Raffle: 10:15-ish

Cost:
$20.00 Per Person by May 2nd, $25.00 after; $15.00 Kids 14 & Under, Free Kids Fun Run (6 & under)

Proceeds benefit NH EDS Coalition for educational programs in New Hampshire.

For more information and to register, visit https://www.nhedscoalition.org/calendar/hoofbeats2018

Maryland Ehlers-Danlos Support Group

June 10

EDS Awareness in Centennial Park

Event address:
10000 Clarksville Pike, Ellicott City, Maryland 21042 United States
https://goo.gl/maps/cG5mN4ByBg62

The Maryland EDS Support Group’s “EDS Awareness in Centennial Park” is an opportunity for those with EDS or HSD and family members to talk about our conditions and share EDS and HSD brochures with the public. We will have an Icee food truck which will be donating all profits to the Ehlers-Danlos Society and pass out EDS and HSD brochures with each order. We will have a Potluck Picnic as well where attendees can meet others and have fun with those who really “get it”.

Note: This is an Awareness – Fundraiser – Social Event.
Those interested in attending should contact the Maryland EDS support group at MarylandEDS@gmail.com to obtain the Signup Genius link to RSVP.

Contact:
Shani Weber – ShaniLWeber@gmail.com