On June 11th RI EDS support group volunteers will be at the Rhode Island State House in the afternoon raising awareness for EDS and related connective tissue disorders. We will have a table set up on both the House and Senate sides.

We had two wonderful awareness events at Rhode Island Hospital in May, and we were lucky enough to have one of them fall on the same day as free ice cream day! We had many people stop by and provided information about Ehlers Danlos Syndromes and our support group. Every time we do an awareness event we meet people living with EDS, or one of the related connective tissue disorders, and we are able to let them know they aren’t alone.

JUNE MEETING! JUNE 27TH PUTTING TOGETHER A MEDICAL BINDER

This meeting will be held at the Warwick Public Library on Sandy Lane from 2-4pm. The meeting will also be available online, but this is a meeting that would be very beneficial to attend in-person. Binders will not be provided, please bring a binder. Printing is available at the library for a CASH ONLY fee. This meeting will be recorded. https://rieds.org/junemeeting

To join our email list please email Krista@rieds.org with the email you would like to use, and save this Krista@rieds.org email address to your contacts.

Are you looking for a way to raise awareness of Ehlers Danlos Syndrome this May? Here is a list of all of our Cities and Towns and information on how you can get EDS recognized in your home town! Ask for a Proclamation today! (Sample Proclamation below) If you do plan on requesting a proclamation, please let me know krista@rieds.org so that we can avoid duplicates and I can help match people in the same area up.

Barrington: https://www.barrington.ri.gov/ Phone: 401-247-1900

Bristol: https://www.bristolri.gov/ Phone: 401-253-7000

Burrillville: Contact the Town Clerk: You can reach out to the Town of Burrillville RI | regarding requests for local proclamations, which are typically handled by the Town Council. https://www.burrillville.org/town-clerk/pages/open-government-rhode-island

Central Falls: Contact the Mayor’s office https://www.centralfallsri.gov/mayors-office

Charlestown: Local requests go through the Town Council, require 30-day advance notice, background information, and specific sample language. https://charlestownri.gov/townclerk

Coventry: Local requests should be directed to the Coventry Town Clerk https://coventryri.gov/town-clerk

Cranston: To obtain a proclamation in Cranston, RI, you should contact the City Clerk – https://www.cranstonri.gov/departments/city-clerk-records-and-licenses/default.aspx

Cumberland: Contact the Mayor’s Office: The Mayor’s office often handles official recognitions and local proclamations. https://www.cumberlandri.gov/181/Mayors-Office

East Greenwich: “Praise & Recognition” online form, which is used for special honors. Alternatively, contact the Town Clerk’s office at 125 Main Street https://www.eastgreenwichri.gov/FormCenter/Contact-Forms-4/Praise-Recognition-49

https://www.eastgreenwichri.gov/216/Contact-Us

East Providence https://eastprovidenceri.gov/government/mayoral-proclamation-request

Exeter: Contact the local Town Council – https://www.exeterri.gov/clerk

Foster: Request through the town clerk – https://www.townoffoster.com/town-clerk

Gloster: Submit a written request to the Town Clerk’s Office, located at 1145 Putnam Pike, Chepachet, RI 02814, or via email – Town Clerk: Jean M. Fecteau 401-568-6206, ext. 0

401-568-5850, fax jeanfecteau@glocesterri.gov townclerk@GlocesterRI.gov

Hopkinton: Request a local recognition from the Hopkinton Town Council – https://www.hopkintonri.gov/town-clerk

Jamestown: Submit request through the citizen request portal – https://www.jamestownri.gov/citizenrequest

Johnston: Request at the town Mayor’s office – https://www.johnstonri.gov/1250/Mayors-Office

Lincoln: For information try contacting the Lincoln Town Administrator, but I couldn’t easily find more information.

Little Compton: Contact the town clerk for information – https://www.littlecomptonri.org/departments/town_clerk/index.php

Middletown: I couldn’t find direct information, try contacting the town administrator – https://www.middletownri.gov/

Narragansett: Contact the town clerk’s office- https://narragansettri.gov/331/Town-Clerks-Office

New Shoreham: For local recognition, contact the New Shoreham Town Clerk’s office to inquire about town council proclamations https://www.newshorehamri.gov/151/Town-Clerk

Newport: I couldn’t find information https://www.newportri.gov/

North Kingstown: Local proclamations usually involve contacting the North Kingstown Town Clerk’s Office or Town Council directly. https://www.northkingstownri.gov/

North Providence: To get a proclamation in North Providence, RI, you should contact the North Providence Town Clerk’s office at (401) 232-0900 or submit a request to the Mayor’s office https://northprovidenceri.gov/town-clerk/

North Smithfield: To get a proclamation in North Smithfield, RI, you can request one from the Town Council via the Town Clerk – https://www.nsmithfieldri.gov/170/Town-Clerk

Pawtucket:  Contact the Mayor’s Office directly at Pawtucket City Hall. https://pawtucketri.gov/mayors-office-2/

Portsmouth: Contact the Town Clerk – https://www.portsmouthri.gov/154/Town-Clerk

Providence: Online request to the mayor – https://www.providenceri.gov/mayor/mayors-office-event-request/

Richmand: For local recognition, contact the Richmond Town Council regarding proclamations https://www.richmondri.gov/140/Town-Clerk

Scituate: May not be available but contact Town Clerk at 195 Danielson Pike or calling 401-647-2822 https://www.scituateri.gov/departments/town_clerk/index.php

Smithfield: Local Proclamation (Town of Smithfield): Contact the Town Clerk’s Department to request a proclamation or resolution from the Town Council. https://www.smithfieldri.gov/departments/town-clerk

South Kingstown: Town Clerk: The Town Clerk’s Office processes requests, which can be dropped off or mailed. https://www.southkingstownri.gov/275/Town-Clerk

Tiverton: Reach out to the Tiverton Town Clerk’s office at 343 Highland Road to inquire about local proclamations for community events or residents. (Best to be local resident to make requests) https://www.tiverton.ri.gov/211/Town-Clerk

Warren: Contact the Town of Warren Clerk’s Office to inquire about Town Council proclamations. https://www.townofwarren-ri.gov/i_want_to/learn_more_about_open_government.php

Warwick: Warwick City Council (Local Recognition): Method: Contact the Warwick City Council Legislative Department. Details: Proclamations are often presented to honor local residents, organizations, or events. https://www.warwickri.gov/city-clerks-office

West Greenwich: May not be available, You may consider contacting the West Greenwich Town Clerk to ask if the Town Council issues local proclamations – https://www.wgtownri.org/181/Town-Clerk

West Warwick: Contact the town clerk – https://westwarwickri.gov/clerk

Westerly: May not be available – https://westerlyri.gov/178/Town-Clerk

Woonsocket: Contact the Office of the City Clerk. Visit City Hall (169 Main Street, Woonsocket, RI 02895), call, or check the city website to submit a formal request.

(MODIFIED) TEMPLET FROM THE EHLERS-DANLOS SOCIETY https://www.ehlers-danlos.com/may-awareness/proclamation-challenge/

EHLERS-DANLOS SYNDROMES AND HYPERMOBILITY SPECTRUM DISORDERS AWARENESS MONTH 

MAY 2026 

PROCLAMATION 

WHEREAS, 

Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders that together affect 1 in 5,000 people. Each type of EDS has its own set of symptoms, but some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility. 

WHEREAS,

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other symptoms, such as fatigue, headaches, GI problems, and autonomic dysfunction are also often seen as part of HSD. 

WHEREAS,

There is no cure for any type of EDS or HSD. The conditions are managed by addressing a person’s symptoms. EDS and HSD can cause a variety of symptoms in many different areas of the body, so people with these conditions often require multiple providers in different specialties to manage their care.  

WHEREAS,  Access to professionals who are knowledgeable about EDS and HSD is limited in (name of city/town). Lack of awareness about EDS and HSD in (name of city/town) and across the world stands in the way of the diagnosis, management, and research of these conditions. 

WHEREAS,  Awareness about EDS and HSD by both medical professionals and the general public can help improve the lives of people living with EDS and HSD in (name of city/town). 

NOW, THEREFORE, BE IT RESOLVED THAT the (city/town) of (Rhode Island/state) hereby declares May 2026 as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month.  

______________________________________

(Mayor/Clerk/Town Council)

Send a copy to the Ehlers-Danlos Society for their yearly proclamation challenge!

Save the date for our meeting on awareness events and advocacy training May 9th! Details to follow.

Rhode Island EDS Awareness and Support Group Meeting

When: Saturday, November 15th, 2:00pm – 4:00pm

Where: Small Meeting Room, Warwick Public Library, 600 Sandy Lane, Warwick, RI

Zoom: https://rieds.org/novembermeeting

Are You Eligible?

Lesser known programs and services that can help EDSers’ physical, mental and financial health.

Guest speaker: Ana Antonopoulos, MSc, CHW

Ana has experience as an EDS caregiver, a community health worker, a health professional, a policy advocate, and a biomedical scientist. She is also a certified HealthSource RI navigator.

She will discuss organizations to contact when you need help, and a range of benefits you may not know about, including TDI, TCI, intermittent FMLA, respite care, housing assistance, energy assistance, copay assistance, multiple forms of transportation assistance and livable homes grants.

Email Ginny Law at valaw1@cox.net if you have any questions.

Our next meeting is coming up this Saturday. This is going to be a popular event. We have booked the biggest space we were able to with over 100 seats and space for wheelchairs.

Our next meeting will be on November 15th at the Warwick Public Library.

Both upcoming meetings will be available online, for this months meeting the link is:

https://rieds.org/octobermeeting

 

September 13th 2pm-4pm- Warwick Public Library on Sandy Lane in the small meeting room, and also online at https://rieds.org/septembermeeting

October 25th 1:30pm – 4:15pm – Barrington Public Library located at 281 County Rd, in the Salem Family Auditorium

Barrington Public Library, Salem Auditorium from 2pm to 4pm the movie will start promptly at 2:10 and there will be time after the movie for discussion.

Contact Krista@rieds.org for more information and seat reservations. We will have seating available at the event day of, no RSVP is required.

DON’T MISS THIS OPPORTUNITY! We don’t know when the next showing of this movie will be in our area.

YOU DO NOT NEED TO BE A MEMBER OF THE RI EDS SUPPORT GROUP TO ATTEND

THIS EVENT IS FREE but we are asking for donations to contribute to the Coalition Against Pediatric Pain’s Send a Smile program. We will be collecting toys, games, gift cards and gifts for children of all ages up to young adults.

Another way to help is to donate directly to The Coalition Against Pediatric Pain!

Donate

There is also a scholarship https://tcapp.org/karen-richards-scholarship/

Trailer – https://youtu.be/JxgboY9b9Io

We have two events in June;

First up is June 3rd at the RI State House for EDS Awareness day. Ellen will be running this event. We have enough volunteers to man the awareness tables but members are encouraged to stop by!

Next up is the Rhode Island showing of the movie Complicated on June 21st. You can register by emailing Krista@rieds.org or register at the event. 

We do still need volunteers for this event if you are interested contact Krista@RIEDS.ORG

Here is more information about the documentary –

https://openeyepix.org/complicated#complicated-1

Join us for our monthly meeting in-person or on Zoom. This meeting will not be recorded. All welcome! RSVP not required.     When: Saturday, April 26th, 2025 at 2pm to 4pm Where: Warwick Public Library, 600 Sandy Ln, Warwick, RI 02889 Zoom: https://rieds.org/aprilmeeting     You are not alone! Connect with fellow zebras for an informal get together. Make new friends, share experiences and learn tips, tricks and life hacks. Feel free to bring items for “show and tell”.   We can also discuss ideas for future social get togethers, meeting topics and guests.   Our meetings are always “come as you are, bring what you need, do what you need to do to be comfortable”. Come late, leave early… walk around, lie down, bring pillows… it’s all good.   ***** If you are attending in-person please help us create MCAS friendly event. We ask that no one wear any fragrance and be mindful of any heavily scented moisturizers or laundry detergent that could set off allergies. We also ask that anyone bringing food is mindful of allergies and does not bring any peanut or seafood of any kind. *****   On June 3rd we are having an awareness event at the Rhode Island State House Time: 2-4pm We need about 6 volunteers. We will have 2 tables set up with awareness materials and we will be available to chat with anyone at the State House that stops by one of the tables. We will have 2 tables set up. May is EDS Awareness month; this event will be to celebrate May and raise awareness of EDS and comorbid conditions. We are also working on securing a time and day for a showing of Complicated – The Movie. Here is a trailer for the movie – https://www.youtube.com/watch?v=bvVO6bqYv6s Facebook page – https://www.facebook.com/complicatedthemovie/ This movie was filmed locally, and I know some of you saw it at a private premiere in the area last year. This event will be a public event and everyone is invited! We should have more information on that event very soon. Most likely also in June on a Saturday. We will need at least 4 volunteers for the Movie event, I know it is hard to commit without a date, I will send another email when we have the location and day confirmed.

We have had quite a few newly diagnosed members join us recently. Our next meeting will provide tips for the newly diagnosed. Please join us even if you have had your diagnosis for years, it will be so helpful for our new members to hear from you on how you have been living with Ehlers Danlos or other related connective tissue disorders.

Our next meeting after this one will be in September. Date and topic TBA.