Winter/Spring News

February Meeting 2/9/19 – This month we will be doing something different! We will be having our first online meeting on 2/9/19 at 2pm with Guest Speaker Ellen Lenox Smith who will be doing a presentation

How I have Improved my Life with EDS’  

Ellen Lenox Smith has emerged as a leading voice for patients living with pain in RI. Mrs. Smith brings a reasoned and compassionate perspective to the need for safe patient access to medicine. She was a former middle school 8th grade Social Studies teacher, master swimmer, and high school swim coach. Ellen suffers from two rare conditions. Ehlers-Danlos Syndrome and Sarcoidosis, which causes enlarged lymph nodes and granulomas in her lungs. Both these conditions are currently not curable.

Ellen is co-director for Cannabis Advocacy for the US Pain Foundation, is on the board of both the US Pain Foundation and the Rhode Island Patient Advocacy Coalition (RIPAC) as media coordinator. She has been appointed by the governor to the ATEL Program, (Adaptive Telephone Equipment Loan Program), is appointed on the Oversight Committee for medical cannabis program and helps with media exposure for the RI EDS Support group. She was a staff writer for Pain News Network and today writes for National Pain Report and1000 Watts Magazine and along with her husband, speaks out to educate others about her condition and pain management. She is also the author of two books: It Hurts Like Hell!: I Live With Pain– And Have A Good Life Anyway and My Life as a Service Dog. Mrs. Smith is a resident on a small farm in Scituate, Rhode Island with her husband, Stuart (and her Service Dog Maggie) Ellen and Stuart have been married for 45 years!

How to join the meeting

Our next meeting at the Warwick Public Library will be on April 6th 2019 from 2pm to 4:30pm Topic is TBA. I should have an update/location/date for our March meeting in the next couple weeks.

The library is fully booked for March, if you have an idea for a group meeting topic or place email

Would you like to present at one of our meetings or know of someone who would like to and can benefit the group email or

Have questions for Ellen but unable to make the meeting? Feel free to email her!

Our Group Anniversary Party celebrating 6 years together will be on May 11th 2019 at the Warwick Public Library in the Large Meeting room. I’m looking for donations for our raffle to help pay for our party and group expenses, please let me know if you can help! We are also looking for food and drink donations for the party.

Have you ever organized an awareness walk? Are you interested in volunteering for the group and setting up an awareness walk or other awareness event this May/Summer? We would love to have you join us! We are looking for someone to help keep our social media accounts up to date, it would be very little work just a couple minutes a week! We will also need help getting awareness materials printed for our awareness events for anyone looking for ways to help out.

We will be heading back to the RI State House in May for another Awareness Day after we had such great success last year, date TBA.

For those of you in school, especially High School/College, consider setting up an awareness table or poster for May. If you need posters let me know and I will get them printed for you, EDS Cares has some wonderful and informative posters.

Do you work or have connections in a local hospital/urgent care/walk-in or medical building? We could really use your help getting permission to set up posters/awareness tables in these locations!

Other ideas for raising awareness in May (and every day!) – Get a magnet/bumper sticker for your car, Use a washable car marker and make your car a travelling EDS awareness billboard. Pick up some awareness T-shirts! Feeling Creative? Design your own awareness shirt for the group and we will help you advertise it! Another idea is to set up social media posts on twitter, facebook, Instagram share a post each day in May with information about EDS and Connective Tissue Disorders/Comorbidities.

In past years we have had members get a human interest story published in the paper or local magazine.

A few places to try:

The Providence Journal

The Valley Breeze-Cumberland/Lincoln Edition.

The Reminder

The Newport Daily News

The Rhode Island Echo

This Week

The Valley Breeze-North Smithfield/Woonsocket/Blackstone

The Valley Breeze & Observer

The Warwick Beacon

Let us know what you’ll be doing for May! Have a great way of raising awareness for EDS and other connective tissue disorders this May/year? Share with us!