Monthly Archives: May 2015

2015 School Nurse Conference Awareness Event

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We had a wonderful time today at the School Nurse Conference. Thanks to everyone who came out. Special thanks to Ginny Law​ for getting us the opportunity and working tirelessly to get us even more opportunities for community outreach! Thanks also to Krista Brack, Xantha McCartney​, Jen Corneau​ and Christine Morphis​ for volunteering their time and resources to make this event so successful. It was an amazing event. They were very happy to have us and will let us know in the future of other opportunities for us to raise awareness! If anyone else has pictures we would love to see them!

Some resources provided to us for free from the Marfan Foundation and Healy Physical Therapy and Sports Medicine, Inc. We thank them both for their continued support!!

Other materials printed/provided by the Rhode Island Ehlers Danlos Awareness and Support group with assistance from Ehlers Danlos Syndrome Network C.a.r.e.s. , Inc., EDS Today, and the Ehlers Danlos National Foundation.

If you would like to help us continue to reach more people with our community outreach efforts we need help with our printing costs! If you would like to help us with the printing costs and other group activities there is a donate button to the right of the main page on our website (www.rieds.org). If you would like to donate by check or some other way such as office supply gift cards please contact Krista – krista@rieds.org. Currently all of our costs are paid for directly by our members, most of whom are too ill to work but give what they can to keep our efforts going, we could use your help!

http://www.marfan.org/

http://www.healyphysicaltherapy.com/

http://www.ehlersdanlosnetwork.org/

http://edstoday.org/

http://www.ednf.org/

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Next Meeting and upcoming events

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May 30th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. We will have an update on our May events; we would love to hear from you about what you did this May to raise awareness. We will also be discussing the summer conference season and will have a guest speaker who will be doing a workshop on using Essential Oils.

June 7th Joint Meeting of the Ehlers-Danlos New England/Massachusetts Support Group and the Massachusetts Chapter of the Marfan Foundation at Children’s Hospital in Waltham, MA from 1 PM to 5 PM.  Contact Jon Rodis for more information. Jon’s new email – wsalmgcdjm@comcast.net

June 27th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Details to follow.

September 12th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886. September is Pain Awareness Month, it is also Chiari Awareness month!

September 19th –US Pain Foundation Pain Awareness Event at Miriam. Details to follow!

Upcoming Conferences:

 June 25th -27th –CEDSA (Center for Ehlers-Danlos Syndrome Alliance) Conference-Romulus, MI https://cedsa.org/cedsa-info/matrix-of-ehlers-danlos-syndrome-conference-2015.html

 August 6th–9th– The Marfan Foundation Conference-Chicago, IL http://www.marfan.org/resources/patients/conference

August 13th-15t– EDNF Conference-Baltimore, MD http://ednf.org/annual-conference

September 26th – Marfan Foundation New England Symposium – Manchester, NH

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Come join us today at the Marfan Foundation’s Walk For Victory!

We will be joining the Marfan Foundation and the New England EDS group in this years Walk for Victory! I’ll be there around 11:30 wearing my EDS shirts and carrying a banner for the RI group, I should be easy to spot 😉 Here is the information that is up on the website for anyone looking to join us:

Location

Salem Willows Park
167 Fort Avenue
Salem, Massachusetts

Registration & Check-in: 12:00 pm

Walk Start: 12:30 pm
Join us for our 2nd Annual Walk for Victory and help us raise awareness and advance our life-saving work. Grab a friend, join a team, or make your own team and get ready for some fun in the sun! Enjoy a mile-long leisurely walk with other affected families and friends and then celebrate with some snacks, music, and games!

Benefits for Walkers:
– Your own personal or team fundraising webpage
– Snacks, games, and DJ entertainment
– The chance to connect with others in your community
– Satisfaction in knowing that you are helping to save lives and improve the quality of life for the many thousands of individuals and families affected with Marfan syndrome and related disorders.

Additional Details:
– Your registration fee covers your entry fee into the walk and all food and activities
– Every walker that raises at least $100 will get an exclusive Walk for Victory t-shirt
– There will be prizes for Top Fundraisers

REGISTER TODAY!

Early Bird Registration (through April 14) – FREE

Standard Registration (April 15 – May 15) – $10 per person

Walk Day Registration (May 16) – $20 per person

http://www.firstgiving.com/marfan/2015WFV-Mass

 

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