Monthly Archives: June 2017


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: use this link to join our team, please also share the link and walk information with your social groups!

Boston Walk Main Page: 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

Thanks so much and I hope to see you there!

Krista Brack RI EDS Group Leader