Monthly Archives: April 2014

Updates For MAY

We will be hosting an awareness event at Miriam Hospital on May 20th to the 23rd, here is some information on that:

Miriam Hospital is allowing us to set up a table in the hallway for four days in May, Tuesday through Friday. We will have the table and room for three people for May 20th– May23rd from 8am to 5pm. We will go over this in more detail at the meeting, anyone who is interested in signing up for a block of time at the table, email me with Hospital Table in the subject and in the body of the email let me know what day and what block of time you would like to do. The options for blocks of time will be as follows:

 

8am-12pm

8am-10am

10am-2pm

12pm-5pm

2pm-5pm

 

If you would rather come for a shorter period as a fill in for twenty minutes or an hour that would be wonderful also! Let me know what you’d like to do and we will see what we can do!

 

We now have a closed Facebook group, https://www.facebook.com/groups/RIEDSSUPPORTGROUP/ if you have any trouble getting in please email me, krista@rieds.org

Our next meeting is on MAY 10TH AT 10AM! Hope to see you there! Along with awareness activities, Ellen and Nicole will be giving a brief demonstration of their wonderful service dogs, Maggie and Watson.

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CURRENT EVENTS

Our next two meetings are:

May 10thRI EDS Awareness/Support Group Meeting 10am-12pm Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886 MAY is EDS awareness month! Looking for ways to raise awareness in May? Come see what we will be doing!

June 7th – RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886. Jennifer Walsh will be giving a broad overview of the genetics of EDS during the first half of this meeting. Jennifer Walsh is a Genetic Counselor with Hasbro Children’s Hospital and Rhode Island Hospital.

And here are some other things happening in the area in the coming months. If you know of an event that should be listed please let me know email krista@rieds.org

May 4th EDS NE/MA Support Group MeetingMay 4th- Jon Rodis at WSALMGCDJM@aol.com at Children’s Hospital-Waltham from 2 PM to 5 PM

May 10th – Marfan Foundation’s Walk for Victory- Salem, MA 12 noon– Salem Willows Park
Salem, Massachusetts contact- Kerri Cavanagh 516-883-8712 ext.138 kcavanagh@marfan.org

May 17th – Diva’s Day Out – The Mindz Eye- 11 Airport Road Warwick, RI – Join the Dysautonomia Diva’s for a day of rejuvenation, workshops, meditation class, lunch and two Diva Services of your choice! Tickets are $99.00 until May 10th, $119.00 after. Contact Amanda 401-573-2621 or email Dysautonomiadiva@hotmail.com

June 7th – RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886. Jennifer Walsh will be giving a broad overview of the genetics of EDS during the first half of this meeting. Jennifer Walsh is a Genetic Counselor with Hasbro Children’s Hospital and Rhode Island Hospital.

July 10th-12thEDNF 2014 Learning Conference –It will be held this year at the Hilton Americas Hotel in Houston Texas. Registration is now open – www.ednf.org

July 10th-13thMarfan Foundation Conference in Baltimore, MD – It will be hosted by Johns Hopkins Hospital

July 11th-14th – 2014 Dysautonomia International Conference & Lobby Day Hyatt at Dulles International Airport in Herndon, Virginia, just outside of Washington, D.C. Registration for the conference is $175 per person before May 1, 2014 and $200 thereafter. Registration includes participation in all seminars, presentations, social activities, lunch on Saturday and Sunday, and a Saturday night Awards Dinner. Bus transportation to and from Capitol Hill for Monday’s Lobby Day is also included. Seating is limited, and registration will be accepted on a first come, first serve basis. The 2013 conference sold out well in advance, so we recommend registering early.

July 17th-19th – The Center for Ehlers Danlos Syndrome Alliance (CEDSA) ‘Matrix of EDS’ conference is being held in Grand Rapids Michigan. It will be at the Amway Grand Plaza Hotel.

 

September 13th6th Annual New England Symposium-September   13-Elliot Hospital-1 Elliot Way-Manchester, NH (10:00 am – 3:00 pm) Join us in New Hampshire on Saturday, September 13,   for a one day educational symposium on Marfan syndrome and related connective   tissue disorders. Drs. Hal Dietz, Thor Sundt, and Brad Tinkle are the keynote   speakers this year. Topics include Marfan syndrome, Loeys-Dietz syndrome,   Ehlers-Danlos syndrome, pain management, growing older with connective tissue   disorders, preparing for surgery, applying for Social Security Disability,   genetic testing, and more. Please mark your calendars. Registration coming   soon. Cost:$35 per adult/$20 per child (6 to 17 years) before August   13, 2014. $40 per adult/$25 per child after August 13, 2014.Fee includes   continental breakfast and snacks. Questions: Contact Rene Jones or   Kaddy Ackroyd at coordinator@nhvtmarfan.org
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April Meeting

Our next meeting is April 12th

RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library

Large Meeting Room, 600 Sandy Lane Warwick, RI 02886.

Eric Palmer owner of PTI, Pedorthic Technologies, Inc will be giving a presentation during the first half of this meeting.
‘A native Rhode Islander, PTI owner Eric Palmer has more than twenty years of experience evaluating, fabricating, and fitting his patients with all types of custom-made orthotics and bracing.
Eric enjoys helping his patients remain independent by providing quality products and services that enable them to maintain their normal routine.’

The second half of the meeting will be to talk about May Awareness, our plans for May and what we are doing as a group into the summer. Don’t forget if you want to order an awareness T-Shirt let me know BEFORE April 5th!

I have a NEW EMAIL KRISTA@RIEDS.ORG if you would like to be added to the update list let me know. Thank you!

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