Monthly Archives: December 2014

Upcoming Events:

January 3rd RI EDS Awareness and Support Group Meeting2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Special Guest Speaker Jon Rodis and Kathleen Kane, ESQ will be talking to us and answering questions about filing for disability.

January 11th CT Support Group Next Meeting – Sunday, January 11, 2015 at 2:00pm

66 Railroad Street, New Milford, CT for more information contact – Eloise Ribisl Stager

February  7th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886 – Please note change for this month to the small meeting room. Unfortunately the large room won’t be available for Feb/March and we will be meeting in the small room for February and are considering an alternate location for our March meeting.

February 8th The ‘Joint Get Together’ of the EDS NE/MA Support Group and the Massachusetts Chapter of the Marfan Foundation is February 8th at Children’s Hospital in Waltham, MA from 1 PM to 5 PM.  (More details to come.)

March – TBA

April 18thRI EDS Awareness and Support Group Meeting2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Special Guest Speaker – A nurse from Blue Cross is coming to speak to us about the best ways to advocate for ourselves and to get the best care we can.

MAY IS EHLERS DANLOS AWARENESS MONTH

Start thinking about ways to raise awareness now, we will be talking about this at future meetings, if you have ideas on raising awareness and would like to join with others in planning some of these events I would love to hear from you. Last year we were very lucky to get in at Miriam for an entire week in May, this year I would love to get in at multiple hospitals, have a walk to raise awareness, try and get some fundraisers going – car wash, car show, selling cookies and other items, I have lots of information on this if you are available for fundraising let me know!

Exciting news from our friends at The Coalition Against Pediatric Pain! Here at last: Family Summer Camp for Pediatric Pain Patients — Free of Charge!!! The Coalition Against Pediatric Pain (TCAPP), RSDSA, and the US Pain Foundation have partnered with The Center for Courageous Kids in Kentucky and have pooled all of our resources to create a camp for kids in pain. This will be a family camp that will take place at The Center for Courageous Kids in Scottsville, Kentucky from July 14-17th and is free of charge. It will be a time for families and kids that deal with daily pain to kick up their heels and have fun in a safe, accepting environment! For more about this and other things TCAPP is up to – www.TCAPP.org

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