Upcoming Meetings!

Our meeting schedule for the next few months is as follows:


March 3rd Large Meeting room at the Warwick Public Library 2pm-4:30pm

April 14th Small Meeting room at the Warwick Public Library 2pm-4:30pm

May 12th Large Meeting room at the Warwick Public Library 2pm-4:30pm


Our neighbors in Massachusetts will be meeting next on March 11th! Contact Jon Rodis for more information and to RSVP – wsalmgcdjm@aol.com


TO STAY UP TO DATE ON LOCAL EVENTS CHECK OUT THE EVENT CALENDER – http://teamup.com/ksef9b75cbb080a6de/

Join us this Saturday as we learn about Mast Cell Activation Syndrome and talk about upcoming events!


Due to the health of our admins our January meeting has been canceled. Our next meeting will be February 10th, at the Warwick Public Library on Sandy Lane from 2pm to 4:30pm

We will be discussing what topics and speakers we will be having in 2018. We are going to try to alternate discussion topics and guest speakers this year. Come to our February meeting and let us know what you want to talk about, hear about or learn about in 2018! We will also talk about different medical conferences happening in 2018 and find out who is going to what one. If you aren’t able to attend the meeting but would like to have your ideas included you can email them anytime to krista@rieds.org


Next Meeting, October 28th

We welcome all of our members to come and share about themselves, ask questions and share tips and tricks that learned along the way to help each other make our lives easier and better. The holidays and winter will be here before we know it! All of the extra activities, change in temperature, bad weather can be tough for us so we will also be sharing ways to get though the season safely and with hopefully less stress. We are dedicating this meeting to you, our members. We will not have a guest speaker. We invite you all to come out, have some coffee and a snack, meet and talk with fellow members in a welcoming and understanding environment.


Guest Speaker Ellen Lenox Smith: Cannabis and Ehlers Danlos Syndrome

This weekend only! Ellen will be giving  a special preview of her presentation for this summers conference, if you won’t be able to travel out of state now if the time to see it!

Mrs. Ellen Lenox Smith has emerged as a leading voice for patients living with pain in Rhode Island. Featured in local and national press, Mrs. Smith brings a reasoned and compassionate perspective to the need for safe access to medicine. This year, she spoke at the ASA Unity Conference on this topic of access to proper and affordable treatment and medication. Mrs. Smith has been featured in NY Times, Washington Post, NPRI local, national, the front page of the Providence Journal twice, and more. Mrs. Smith is also an author It Hurts Like Hell!: I Live With Pain– And Have A Good Life Anyway and My Life as a Service Dog.

Mrs. Smith suffers from two rare conditions. One is Ehlers-Danlos Syndrome. In 2006, she was accepted into the Connective Tissue Research at the National Institute of Health to help search a cure for Ehlers-Danlos Syndrome. Her second condition is called Sarcoidosis, which causes enlarged lymph nodes and granulomas in her lungs. Both these conditions are currently not curable. She presently has endured twenty- three surgeries and countless visits to her doctors.

Presently, Mrs. Smith is a Rhode Island ambassador for both the US Pain Foundation, on the board of both the US Pain Foundation and the Rhode Island Patient Advocacy Coalition (RIPAC) as media coordinator, and helps with media exposure for the five-year-old EDS RI Support group. She is a staff writer for both Pain News Network and 1000 Watts. 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 42 years! They are proud parents of four adult children and three grandsons, with another Grandchild on the way!

Event Happening Sunday June 11th

The Boston Walk for Victory is happening this Sunday! (June 11) We at RI EDS will be walking as part of Team Zebra. We have participated in the walk every year so far and are so happy to do it again, especially because this year all the money raised by Team Zebra will go directly to EDS research! We all know how much we need more research and more awareness so help me spread the word about the walk, join us if you can and if possible make a small donation or encourage your friends, family or community to do so. Research is imperative for us to live better, less painful lives and we are so much stronger together! You can register for the walk online until June 9th but will still be able to register in person on the day!

The Marfan Foundation works to create a brighter future for everyone living with Marfan syndrome and related disorders. This includes funding research, providing patient support, and conducting public and medical education to ensure that everyone affected is diagnosed and treated. The Walk for Victory helps fund our life-saving programs and services.

Join us for our 3rd Annual Boston Walk for Victory and help us raise awareness and advance our life-saving work. This nationwide walk program focuses on community and puts the FUN in fundraising! Grab a friend, join a team, or make your own team and get ready for some fun in the sun.

Welcome to the home of Team Zebra! (Intro from Kathleen Kane)
Ehlers-Danlos Syndrome is an incurable, heterogeneous, genetic disorder, resulting in weak connective tissue, (the tissue that makes up skin, bones, blood vessels and other organs). EDS often has early signs and progressive degradation, currently organized in a group of six distinct types that are diagnosed by characteristics, clinical observation, and/or genetic testing. The overall prevalence of Ehlers-Danlos Syndrome is estimated as 1 in 5,000 individuals.   My husband Jon, who is the Co-leder of the EDS New England/Massachusetts Support Group and also is the President of the Massachusetts Chapter of the Marfan Foundation, works closely with several EDS support groups and organizations here in New England and throughout the United States to provide support, promote awareness and initiate needed research in improving the quality of life for all individuals and families dealing with a connective tissue disorder.

I am very happy to be a part of Team Zebra and I look forward to walking with EDSrs from all over New England as part of the Marfan Foundation’s Walk For Victory.  We want to thank the Marfan Foundation for giving us this opportunity to raise much needed awareness of EDS. Please come and join us on June 11th to help raise awareness of Ehlers-Danlos Syndrome, Marfan Syndrome, Loeys-Dietz Syndrome and other related disorders.  To quote my husband Jon, “Together we are indeed strong and connected!”

NEW THIS YEARWe are pleased to announce that ALL $ raised through Team Zebra will go directly to support EDS Research.

Support The Marfan Foundation by making a donation to our team. The process is fast, easy, and secure. And you can be sure that it will benefit a great cause!

Thank you for your support!


Team Zebra: https://give.marfan.org/fundraise/team?ftid=114446 use this link to join our team, please also share the link and walk information with your social groups!

Boston Walk Main Page: https://give.marfan.org/boston/events/2017-boston-walk-for-victory/e116520 Have Marfan or one of the other connective tissue disorders? You can join a team or register as an individual!

More information about the walk:

Registration & Check-in: 12:00pm

Walk Begins: 12:30pm

Benefits for Walkers:

Enjoy a mile-long leisurely walk and connect with others in your community.

Your own personal and team fundraising webpage

Snacks, games, and prizes!

Satisfaction in knowing that you are helping to save lives and improve the quality of life for the many thousands of individuals and families living with Marfan syndrome and related disorders.

Additional Details:

Raise or Donate $100 to receive our 3rd year purple shirt at the walk!

  • Raise $150 to win a ticket to Marfan Awareness Day with the Boston Red Sox
  • Raise $1,000 to receive a Limited Edition Top Fundraiser hat and cinch bag
  • Raise $5,000 as a Team and receive an official Team Tent on the day of the Walk

Raise $1,000 or more by Walk Day and you will be a part of our National Superstar Circle of Excellence. You will recieve VIP treatment at the walk, as well as recognition at our Annual Family Conference in Minnesota!

For more information on Marfan Syndrome and related disorders, visit marfan.org.

Thanks so much and I hope to see you there!

Krista Brack RI EDS Group Leader




Our June meeting will be held on June 17th 2pm-4pm at the Warwick Public Library in the Large room!

Please join us for the annual Marfan Foundation Boston Walk for Victory on June 11th at Boston Common. Join us on the walk (we are Team Zebra!) or just come for a good time raising awareness and making some new friends. It is always a wonderful time!

JOIN TEAM ZEBRA: https://give.marfan.org/checkout/register?eid=116520&ftid=114446

INFORMATION ON THE EVENT: https://www.marfan.org/get-involved/updates/events/2016/06/11/boston-walk-victory#.WSXWeGjythE

We have a couple of local business’s helping to raise awareness this May, please check out the ‘Zebra Milkshake’ at Tilly’s 

And some wonderful Zebra Prints at Lularoe Wayland Square !



Saturday April 29th 2 pm- 4 pm
Cardi’s Furniture Community Room 999 Newport Ave (Rt. 1A)
2nd Floor (Elevator in back brings you closest to the room)
South Attleboro, MA 02703 (Exit 2B off of I-95)

We will be joining the Dysautonomia Support Network (DSN) for a joint meeting in April with special guest speaker Amanda Aikulola LPN, and Dysautonomia Support Network; President, Executive Director, and Founder. Amanda will be talking to us about Dysautonomia and adapting to life with chronic illness ending with a Q&A.

You can join the Facebook event page here: https://www.facebook.com/events/503923119995443/


Join us this weekend for our 2017 planning session!


Saturday January 28th 2pm – 4:30pm

Warwick Public Library

Small Meeting Room

600 Sandy Lane Warwick, RI


TOPIC: Our first meeting of 2017 kicks off with a planning session for the year ahead. This will be a workshop style meeting; we want your input! We will be asking our members what speakers/topics we want to focus on in 2017. We will also talk about the different conferences happening in 2017, plan May awareness events and share upcoming advocacy opportunities.

We will be meeting in the SMALL meeting room this month!

Come learn about EDS, make some friends and help us plan 2017 to make it our best year yet!


  1. Rare Disease Day is February 27th!
  2. RDLA is hosting a Rare Disease Week in Washington DC Events from Feb 27th to March 2nd including a conference, Lobby day and a Rare Artist Reception that features one of our own members, Kayla McEvoy! You can see her submission here: http://www.rareartist.org/portfolio/zebras-matter/ Find out more about Rare Disease Week in DC here: http://rareadvocates.org/registration-now-open-for-rare-disease-week-on-capitol-hill/
  3. One of the events in DC will be a rally at the NIH, I’ll be asking for T-Shirt designs from our members for an Awareness T-Shirt to wear for the event, I will be there representing rare disease patients in RI, I’d love an EDS focus but with the other rare co-morbids as well, let’s see what you guys come up with! (feel like making a design to try it out? TeeSpring and vista print both have easy to use tee shirt design programs)
  4. Along with Rare Disease Day February also brings us Marfan Awareness month, please consider helping raise awareness for our sister condition next month. The Marfan Foundation always has wonderfully informative posts to share all month long.

I hope to see you this weekend at the meeting, but if for any reason you aren’t able to attend but would still like to share your ideas and goals for the year ahead you can email me any time krista@rieds.org


Would you like to be on our May Awareness Committee? You only need the desire to raise awareness in order to help, materials will be provided!

You are all so important to this group, I couldn’t be happier with our group and how we are here to help each other and find support together, I thank you all for joining us for another year!

Krista Brack