Monthly Archives: April 2018

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