Upcoming Fall Events

UPCOMING EVENTS

This months meeting is on September 15th

September is Pain Awareness Month and Chiari Malformation Awareness Month

    

On September 18th, a Tuesday, there will be a protest about the treatment of chronic pain patients. This will be at the State House,

September 22nd Connective Tissue Symposium in NH

https://www.connectivetissuesymposium.org/

In November Lara Bloom will be our Special Guest speaker. Our meeting this month will be in a different location and later than usual please read the flyer for more information! This meeting is on November 4th from 4pm to 6pm.

Happenings in May and June

MAY 12TH

Don’t miss our next meeting! In celebration of EDS awareness month and our 5 years together as a group we are having a party! We will have snacks, raffles, Dress like a Zebra contest, Zebra art work contest, lots of free awareness materials and ideas on how you can raise awareness this May and every day for EDS and Connective Tissue Disorders. If you’d like to help out at the meeting or bring food or drinks contact Krista@rieds.org

MAY 17TH

We will be raising awareness for Connective Tissue Disorders like EDS, Marfan, Sticklers, LDS and others as well as raising awareness of living a life in pain, at the RI State House at 2pm to 5pm. We will have two tables set up and will be talking to people about what it is like to live with a CTD.

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Our neighbors will be having their next meeting soon! NE/MA EDS/Marfan next meeting is on June 10 at Children’s Hospital in Waltham Contact Jon to RSVP or for more info : Jon Rodis wsalmgcdjm@aol.com

The Marfan Foundation 5th Walk for Victory is happening in Massachusetts June 23rd in Boston, MA. All funds raised by team Zebra will go towards EDS research! To join or donate go to https://give.marfan.org/team/154314

Our June meeting is set for June 30th at the Warwick Public Library on Sandy Lane in the Large Room 2pm to 4:30pm

UPCOMING EVENTS

UPCOMING EVENTS:

 

RI EDS/CTD Monthly Meeting April 15th 2-4:30pm at the Warwick Public Library on Sandy Lane

Marfan Foundation NY Symposium April 15th NY/NY

 

RI EDS/CTD 5-year anniversary celebration May 12th 2-4:30pm at the Warwick Public Library on Sandy Lane

RI EDS/CTD Awareness Day at the RI State House May 17th 2pm-5pm email Krista@rieds.org to volunteer

 

American’s For Safe Access May 22-24 Washington D.C.

 

NE/MA EDS/Marfan next meeting on June 10 at Children’s Hospital in Waltham

 

Marfan Foundation 5th Walk for Victory in Massachusetts June 23rd in Boston, MA

 

The Oley Foundation Annual Conference is June 24-27th in Memphis, TN

 

Dysautonomia International Annual Conference June 22-23 Nashville Tennessee

 

Loeys-Dietz Foundation Conference-July 6-8th in Baltimore, Maryland

 

Marfan Foundation Annual Conference July 12-15 Santa Clara, CA

 

Ehlers Danlos Society Annual Conference August 2-4 Baltimore, Maryland

 

ILC EDS Conference November 2-3 Toronto, Canada

 

Know of an upcoming event not mentioned? Email Krista@rieds.org

Want to help Krista attend conferences to bring back information for the group? Share or contribute to her fundraiser – GoFundMe

April Meeting

 

Saturday, April 14th 2-4:30pm

Warwick Public Library

Small Meeting Room

600 Sandy Lane Warwick, RI

Special Guest Speaker: Ellen Lenox Smith

EDS, Cannabis and the Cusack Protocol

Ellen Lenox Smith has emerged as a leading voice for patients living with pain in Rhode Island. 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.

Presently, Mrs. Smith 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) 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 and 1000 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 44 years!

 

MAY MEETING:

May 12th 2pm to 4:30pm

Large Meeting room at the Warwick Public Library located at 600 Sandy Lane Warwick

Happy Awareness Month! We are celebrating 5 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 will do a blind judging and have people put tickets in baskets in front of each piece, most tickets wins!

We will also have a 50/50 raffle with proceeds benefiting the group, snacks and drinks and lots of free awareness information. If you’d like to help by donating items for prizes and raffles or funds for the event, 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

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!

NEXT MEETING FEBRUARY 10TH

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.

MEETING THIS SATURDAY JUNE 17TH

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.

WANT TO HELP?
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!

LINKS:

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

krista@rieds.org